Monday, January 27, 2020

New Tool Predicts Life Expectancy of Dementia Patients

According to McKnight's Long-term Care News, nursing homes may soon have access to a newly developed tool that can accurately predict the life expectancy of dementia patients. 
Care providers are well aware of the importance of discussing the future with patients and their families and considering the needs and wishes of patients toward the end of life. Clinical guidelines also recommend incorporating information on patients’ life expectancy into clinical decisions.  Clinicians, however, encounter several barriers in this process. One of the barriers for the incorporation of patient’s life expectancy in clinical decisions is the uncertainty in predicting the actual survival probabilities. Another barrier is the difficulty of discussing prognosis with the patient. 
Researchers believe the tool could help patients and care providers better communicate about the disease and risk of death, and develop future care plans as it progresses. Timely communication about patients’ survival prognosis may enhance advance care planning and shared decision-making in dementia. 
Nearly 48% of residents in nursing homes have a diagnosis Alzheimer’s disease or other dementias, according to data from the Centers for Disease Control and Prevention.  “In those cases, a tool like this can be an incentive to start such a conversation, which should be held before there are too many cognitive obstacles. This conversation could be about where someone would prefer to live, at home or in other accommodation, or anything else that needs planning,” said Sara Garcia-Ptacek, a researcher at the Karolinska Institutet in Sweden. 
The tool uses four characteristics to predict life expectancy: sex, age, cognitive ability and comorbidity factors. Investigators tested the tool using data from more than 50,000 patients who were diagnosed with dementia between 2007 and 2015. 
Researchers found that that the tool was able to predict three-year survival following a dementia diagnoses with “good accuracy.” It also found that patients who were older, male and had lower cognitive function at diagnoses were more likely to die during that time frame.
According to the study, the observed average survival time was just more than 5 years, with 81 years being the average age for diagnosis of dementia. In comparison, the average 80-year-old person in Sweden has a life expectancy of 9 years. This average is based on the general Swedish population, which includes a significant proportion of persons with dementia, so it should be noted that average survival for persons who do not develop dementia would be expected to be even longer. The author's noted that their results are "very similar to previously reported numbers from a UK population study and fit with our current knowledge of the detrimental effect of dementia on life expectancy." 

The full citation for the original research reports is, "Survival time tool to guide care planning in people with dementia," Miriam L. Haaksma, Maria Eriksdotter, Debora Rizzuto, Jeannie-Marie S. Leoutsakos, Marcel G.M. Olde Rikkert, RenĂ© J.F. Melis, Sara Garcia-Ptacek, Neurology (Dec. 2019,10.1212/WNL.0000000000008745;DOI: 10.1212/WNL.0000000000008745)

Thursday, January 16, 2020

Court holds Two Year Caretaker Exemption Unavailable for Transfer of Home Absent Medical Specific Evidence

A New Jersey appeals court has held that the caregiver exemption does not apply to a Medicaid applicant who could not document that her condition required her daughter to care for her for a full two years before she entered a nursing home. R.K. v. Division of Medical Assistance and Health Services (N.J. Super. Ct., App. Div., No. A-2881-17T1, Dec. 5, 2019).
R.K. transferred her home to her daughter in 2011. Her daughter cared for her in her home until April 2015, when she entered a nursing home and applied for Medicaid. The state imposed a penalty period due to the transfer of the house.
R.K. appealed, arguing that because her daughter had cared for her for two years before she entered the nursing home, the caregiver exemption should apply to the transfer of the house. The caregiver exemption is one of a number of exemptions that protect transfers of assets from impairing Medicaid eligibility. Even after entering a nursing home, you may transfer any asset to the following individuals without having to wait out a period of Medicaid ineligibility:
  • Your spouse (but this may not help an applicant become eligible since the same limit on both spouse's assets will apply);
  • A trust for the sole benefit of your child who is blind or permanently disabled;
  • Into trust for the sole benefit of anyone under age 65 and permanently disabled.  
In addition, an applicant may transfer their home to the following individuals (as well as to those listed above):
  • A child who is under age 21;
  • A child who is blind or disabled (the house does not have to be in a trust);
  • A sibling who has lived in the home during the year preceding the applicant's institutionalization and who already holds an equity interest in the home;
  • A "caretaker child," who is defined as a child of the applicant who lived in the house for at least two years prior to the applicant's institutionalization and who during that period provided care that allowed the applicant to avoid a nursing home stay.
At the hearing, the administrative law judge (ALJ) determined that the caregiver exemption should apply, relying on records that R.K. received hospice care beginning in November 2013. The state rejected the ALJ’s determination because R.K. provided no medical records of her condition from March 2013 to November 2013. R.K. appealed.
The New Jersey Superior Court, Appellate Division, affirmed the penalty period. According to the court, because “there were no medical records demonstrating that R.K. required a special level of care from March 2013 up to November 2013,” R.K. did not demonstrate that her daughter “provided a level of care that allowed R.K. to reside at home rather than an institution or facility” for a full two years.
Obviously, live-in caregivers should obtain and secure medical evidence of impairment.  If you find yourself in this situation, contact our office.  We will provide you a form, suitable for Departments Medicaid to evidence that the provided care allowed the senior/applicant to avoid a nursing home stay..  

Tuesday, January 14, 2020

Administration's Public Charge Rule for Immigrants Headed to the Supreme Court

The Trump administration filed an emergency appeal January 12, 2020, that asks the Supreme Court for permission to implement rules that would make it easier for the government to deny immigrants residency or admission to the U.S. because they use public-assistance programs or might use them in the future.
The administration last August adopted the rules, which would expand the pool of people considered likely to become a “public charge” under U.S. immigration law. The designation prevents an immigrant from obtaining a green card and is used to determine which noncitizens can be removed or prevented from entering the U.S.  Roughly 544,000 people apply for green cards annually. According to the government, 382,000 are in categories that would make them subject to the new review. 
Under the new rules using benefits like Medicaid, housing assistance or food stamps could render an individual inadmissible. Immigrants applying for permanent residency must already show they will not be public charges, or burdens to the country.  The new policy  expands, however, what factors would be considered to make that determination, and if it is decided that immigrants could potentially become public charges in the future, that legal residency could be denied. Receipt of one or more of those designated public benefits for an aggregate 12 months within any three-year period by any noncitizen will be considered a negative factor in determining whether or not they become a public charge.  The rule contains a list of other positive and negative factors, like age, which will be evaluated together to make a public charge inadmissibility determination.
The Administration emphasized that the determination is a “totality of circumstances test,” meaning that receiving one benefit will not be disqualifying for green card or visa applications. According to most experts, immigrants make up a small portion of those getting public benefits, since many are ineligible to get them because of their immigration status.  The rule appeared in part a response to some state governors announcing or signalling that states might expand benefits, including to senior immigrants. 
A New York federal appeals court blocked the rule after leading industry advocates warned immigrant seniors would be hurt and their use of long-term care services impaired. The U.S. Court of Appeals for the Second Circuit handed down the ruling, denying the Trump Administration’s request to lift a temporary national injunction on the “Public Charge” rule, the Associated Press reported. A New York district court issued the injunction in October. 
The New York injunction was one of several that were issued around the time the rule had been scheduled to go into effect in October. But a regional injunction issued in California and another national injunction issued in Washington have already been lifted by other federal appeals courts. That left New York’s as the only nationwide bar to the Trump administration putting the new rule into practice. An injunction in Illinois also is in effect, but applies only to that state.
The three-judge panel of the 2nd Circuit heard arguments over the motion to lift the injunction.  Judges questioned the government’s attorney on the timing — why the injunction needed to be lifted "at this point" when the lawsuit itself would be heard by a judge in coming months.  
Leading Age was among the providers that submitted comments in opposition of the rule after it was first published in August. The National Council of Aging President and CEO James Firman also denounced the rule, which was set to go into effect in October.
“Immigrant seniors who have played by the rules will have to make an impossible choice between going hungry and avoiding needed long-term care support or losing their immigration status,” he said. “This regulation will create a personal and moral hazard for older adults who are looking to age with their families around them.”
More than a dozen states, along with the District of Columbia, challenged the federal government’s rule claiming it targeted poor, legal immigrants trying to become permanent citizens.

Monday, January 13, 2020

As Abuse in Nursing Homes Increases, Congress Focuses On CMS rather than Nursing Home Providers

Among the many reasons to plan to age in place is abuse that visits residents at nursing homes.  According to McKnights Long-term Care News, abuse deficiencies cited in nursing homes more than doubled in four years, increasing from 430 in 2013 to 875 in 2017.  These were among the findings of a 2019 Government Accountability Office (GAO) report. The most common form of abuse consist of physical and verbal abuse by staff, comprising more than half (58%) of all abuse deficiencies analyzed. 

Percentage of abuse deficiency narratives

The Report also concluded, shockingly, that most sexual abuse of nursing home residents come at the hands of nursing home staff, rather than other residents or third parties. 

The Report emphasized that abuse in nursing homes is often under-reported. Moreover, the GAO reported to Congress that even information on reported abuse and perpetrator type is not readily available. Centers for Medicare & Medicaid Services (CMS) does not require the state survey agencies to record the type of abuse and perpetrator.  Worse, when this information is recorded, it cannot be easily analyzed. Therefore, GAO reviewed a representative sample of abuse deficiency narratives from 2016 through 2017.

Nursing home residents often have physical or cognitive limitations that can leave them particularly vulnerable to abuse. Abuse of nursing home residents occur in many forms, including physical, mental, verbal, and sexual, and can be committed by staff, residents, or others in the nursing home. Any incident of abuse is a serious occurrence and can result in potentially devastating consequences for residents, including lasting mental anguish, serious injury, or death. News stories in recent years have noted disturbing examples of nursing home residents who have been sexually assaulted and physically abused.

Federal law clearly mandates that nursing homes receiving Medicare or Medicaid payments ensure that residents are free from abuse. To help ensure this, CMS, an agency within the Department of Health and Human Services (HHS), defines the quality standards that nursing homes must meet in order to participate in the Medicare and Medicaid programs. To
monitor compliance with these standards, CMS enters into agreements with agencies in each state government—known as state survey agencies—and oversees the work the state survey agencies do. This work includes conducting required, comprehensive, on-site standard surveys of every nursing home approximately once each year and investigating both complaints from the public and incidents self-reported by the nursing home (referred to as facility-reported incidents) regarding resident care or safety.

If a surveyor determines that a nursing home violated a federal standard during a survey or investigation, then the home receives a deficiency citation, also known as a deficiency. In addition to state survey agencies, there are other state and local agencies that may be involved in investigating abuse in nursing homes, including Adult Protective Services, local law enforcement, and Medicaid Fraud Control Units (MFCU) in each state, which are tasked with investigating and prosecuting a variety of health care-related crimes.

Attaining and keeping nursing home quality is not a new challenge, and numerous studies and reports have identified CMS challenges in protecting residents from abuse and weaknesses in CMS’s oversight. For example, in multiple reports dating back to 1998, GAO identified weaknesses in federal and state activities designed to correct quality problems in nursing homes. Specifically, in a 2002 report, the GAO found that CMS needed to do more to protect nursing home residents from abuse, and GAO made five recommendations to help CMS facilitate the reporting, investigation, and prevention of abuse in nursing homes.

In April 2019 GAO reported that CMS had failed to address gaps in federal oversight of nursing home abuse investigations in Oregon—an issue that we uncovered during the course of our broader work on nursing home resident abuse.  Further, reports by the HHS
Office of the Inspector General (OIG) have also reviewed incidents of resident abuse and raised concerns about CMS’s procedures.

It is important to note that the legal duty is imposed on each nursing home with CMS oversight helping insure the provides fulfill their duties. If providers perform well their obligations, oversight would be made irrelevant, and more importantly the incidence of abuse would decline.  One might conclude that with abuse rising so dramatically, even as CMS is tightening its oversight capabilities, anger with the industry would be palpable.  In a recent hearing, hovever, Members of the Senate Finance Committee "directed much of their ire not at providers but rather at CMS:
“Not only have abusive incidents doubled in recent years, but the GAO has found that CMS – the agency charged with ensuring that these facilities meet federal quality standards – often cannot access information about abusive incidents after they occur and, therefore, cannot take the necessary steps to remedy the situation,” said Sen. Thomas R. Carper (D-DE).
“CMS needs to ramp up its oversight efforts and fix the problems identified by the Government Accountability Office,” added Sen. Charles Grassley (R-IA), the chairman of the committee.
All parties at the hearing, which included American Health Care Association’s President and CEO Mark Parkinson, stressed a need and commitment to reducing abuse and neglect in nursing homes. They all also found common ground on better background check practices. Ranking committee member Sen. Ron Wyden (D-OR) expressed surprise that 13 states have no background check process for nursing home employees.

There are inconsistencies and loopholes throughout the country when it comes to nursing home oversight, including about providers having to self-attest their ownership, testified Megan H. Tinker, Senior Advisor for Legal Review of the Office of Counsel to the Inspector General, Health and Human Services.  Additionally, a provider can be eligible for Medicaid if it is already in the Medicare program, even if there hasn’t been a background check through Medicare, Tinker added.  “That leaves open a possibility a provider could be a provider for Medicaid with no background check,” she said.

Despite agreement on needing to reduce abuse and neglect, policy makers and experts differed on the best way to achieve those goals, specifically when it comes to funding.

“Medicaid covers two out of three nursing home residents. We need to strengthen Medicaid,” said Sen. Debbie Stabenow (D-MI).

In response to a question about mandatory staffing from Sen. Catherine Cortez Masto (D-NV), AHCA’s Parkinson harkened back to his days running nursing homes, acknowledging that more workers is generally better but also how it depends on how careful and efficient a given certified nursing assistant is.

He also noted that in order to achieve a higher ratio of staff to residents of 4.1 hours per resident per day, as some have suggested, it would cost potentially an additional $6 billion.

“If there’s a mandatory staffing requirement that would be paid for, we’d be all for it,” he said. “But if it’s not paid for, there is no practical way to do it.” 

Lori Smetanka, Executive Director of the National Consumer Voice for Quality Long-Term Care, pushed back in subsequent remarks.

“I think we do need to look at how the money is currently being spent by long-term care facilities,” she said. Her group encourages auditing before assessing how much additional funding is needed.

The GAO made the following recommendations to curb abuse  in its report:
  •  Require that abuse and perpetrator type be submitted by state survey agencies in CMS’s federal databases for deficiency, complaint and facility-reported incident data, and that CMS systematically assess trends in these data.
  •  Develop and disseminate guidance — including a standardized form — to all state survey agencies on the information nursing homes and covered individuals should include on facility-reported incidents.
  • Require state survey agencies to immediately refer complaints and surveys to law enforcement (and, when applicable, to Medicaid Fraud Control Units) if they have a reasonable suspicion that a crime against a resident has occurred when the complaint is received.
  • Conduct oversight of state survey agencies to ensure referrals of complaints, surveys and substantiated incidents with reasonable suspicion of a crime are referred to law enforcement (and, when applicable, to MFCUs) in a timely fashion. 
  • Develop guidance for state survey agencies clarifying that allegations verified by evidence should be substantiated and reported to law enforcement and state registries in cases where citing a federal deficiency may not be appropriate. 
  • Provide guidance on what information should be contained in the referral of abuse allegations to law enforcement.

The hearing was live-streamed and can be viewed on the committee’s website.

Friday, January 10, 2020

Hospice Comprehensive Assessment Measure - One Pager Now Available while the Administration develops HOPE

CMS has posted a document that articulates key information about the current Hospice Comprehensive Assessment Measure. This "one pager" provides a visual depiction that helps providers, seniors, their families, and caregivers, understand how the seven Hospice Item Set (HIS) measures contribute to the one Comprehensive Assessment Measure (CAM), and helps providers to stay on target by completing all seven HIS measures for each patient. The  CAM helps to ensure all hospice patients receive a holistic comprehensive assessment at admission, although it does not replace a comprehensive assessment. 

Of course, while helpful, HOPE is on the way.  Section 3004 of the Patient Protection and Affordable Care Act, requires the Secretary of Health and Human Services to establish procedures for making data available to the public and to ensure hospices have the opportunity to review that data prior to public reporting. CMS is developing a new patient assessment tool to be proposed in future rulemaking. As finalized in the Fiscal Year 2020 Hospice Wage Index and Payment Rate Update and Hospice Quality Reporting Requirements Final Rule, the hospice patient assessment instrument is identified as the Hospice Outcomes & Patient Evaluation (HOPE). This new tool is intended to help hospices better understand care needs throughout the patient’s dying process and contribute to the patient’s plan of care. It will assess patients in real-time, based on interactions with the patient, as opposed to the HIS retrospective chart review. Finally, HOPE will support quality improvement activities and calculate outcome and other types of quality measures in a way that mitigates burden on hospice providers and patients. 

Objectives of the HOPE
The HOPE will provide standardized data as all Medicare-certified hospices will be collecting the same assessment items for all patients. Standardization will allow CMS to analyze the data by patients, hospices, and recognize the differences between hospices. Through data analytic summaries and comparisons, hospice providers will have information to help them identify opportunities to adjust and improve patient- and agency-level decisions about the care they provide. Furthermore, patients and their families will be more informed about the hospice they choose based on quality measures that measure outcomes throughout the hospice stay and public reporting.
The two primary objectives of the HOPE are to:
  • Provide quality data for HQRP requirements through standardized data collection
  • Provide additional clinical data that could inform future payment refinements.
CMS seeks to develop quality measures associated with the new assessment tool that are meaningful to all stakeholders and reflect critical outcomes of care throughout the hospice stay. The measures will meet the Meaningful Measures Initiative objectives to identify high priority areas for quality measure development while reducing burden on hospice providers. They will focus on outcomes and also fit well with the hospice business model. 
Differences between HIS and the HOPE
Currently CMS collects data at admission and discharge via the Hospice Item Set (HIS) that are used to calculate measures in the Hospice QRP. However, while HIS is a standardized mechanism for extracting medical record data, it is not a patient assessment tool because the data is not collected during a patient assessment. Instead, HIS focuses on whether hospices have performed care processes using data from chart abstraction. CMS’s goal for the HOPE is to be more comprehensive than the HIS by capturing patient and family care needs in real-time and throughout the hospice stay, with the flexibility to accommodate patients with varying clinical needs. The HOPE will take into consideration hospice workflow and the Medicare Conditions of Participation. Data in patients’ baseline status and changes in their outcomes from the HOPE will contribute to care planning and inform quality measurement for the Hospice QRP, including outcome measures, and support providers’ quality improvement efforts.
Process for Developing the HOPE
The general process for the development of the HOPE includes, but is not limited to, the following calendar year 2019 activities: information gathering, stakeholder engagement, and preparing for initial testing of the HOPE. After the initial testing, the HOPE will be revised based on test findings before moving forward to national-level testing. After conducting the national-level testing of the HOPE, CMS will incorporate learnings by refining the HOPE and propose the tool in rulemaking and seek public comments. When finalized in future rulemaking, the HOPE will be implemented in the Medicare Hospice Benefit to provide value to hospice providers, patients, and families.   

Wednesday, January 8, 2020

The New Year Finds Nursing Homes Opposing New Minimum Staffing Requirements and Training Requirements for Dementia Care Workers

Nursing home providers are opposing proposed national legislation that would require skilled nursing facilities to meet minimum staffing requirements, and in New Hampshire  are looking to amend a newly effective state law that sets minimum training requirements for facility staff members who care for people with dementia, including Alzheimer’s. The industry is, instead, calling on lawmakers to find solutions to address what they characterize as a "workforce crisis" throughout the industry.

Sen. Richard Blumenthal (D-CT)  recently introduced The Quality Care for Nursing Home Residents Act (S.2943), which would revise minimum staffing requirements for skilled nursing facilities that participate in the Medicare and Medicaid programs.  The legislation has been referred to the Committee on Finance.  Rep. Jan Schakowsky (D-IL) also introduced the proposal (H.R. 5216) in the House. That legislation has since been referred to the House Ways and Means and Energy and Commerce committees.

Mark Parkinson, president and CEO of the American Health Care Association, said in a statement, that the legislation, without additional funding, would make it “impossible for facilities to implement new mandates” without risking additional closures.
“The skilled nursing profession has serious concerns about the practical implementation of the proposals in this bill. Today, our profession suffers from a critical workforce shortage and setting minimum staffing levels will not solve that issue. We need solutions like loan forgiveness that will help attract more workers to the long term care profession.”
He said that while the organization appreciates the interest in quality of care, more discussions are needed about “real solutions like the proposals that will allow reinstatement of CNA training programs. “These types of bipartisan solutions can help make meaningful progress and ensure access to care for seniors and individuals with disabilities across the country,” he said.

LeadingAge CEO and President Katie Smith Sloan said, though the proposed bill is “laudable,” it doesn’t address the true issue facing providers:
“There are simply more jobs open than can be filled across the U.S. In the words of one of our members: ‘We don’t even have people to interview, much less hire. Last year [2017], we had 9,000 RN, LPN, and CNA jobs in our state and only 2,500 applicants.” 
Smith Sloan added that the bill does not address the reason for the staffing shortages, which include demographics (America’s aging population) and money. She also urged lawmakers to support the Nursing Home Workforce Quality Act (H.R. 4468), which she said would “provide an opportunity to build a crucial talent pipeline.  According to Smith Sloan:
“Without mechanisms that address two significant issues, the availability of people to provide the care as well as the growing challenges of financing (Medicaid, which is the primary public source of funding for the majority of nursing homes, is inadequately funded, so providers are not reimbursed for the costs of care), this effort has small chances of achieving its desired end” 

Meanwhile, providers in New Hampshire are looking to amend a newly effective state law that sets minimum training requirements for facility staff members who care for people with dementia, including Alzheimer’s. The law, which went into effect January 1st, was part of the state budget passed by the state lawmakers in September. The minimum training requirements apply to staff members working in residential homes or community-based programs with people who have forms of dementia, according to an Associated Press report. Direct-care workforce staff members, including staff at nursing homes and assisted living facilities, must also complete the training requirements, the Union Leader reported.

“We are committed to culturally competent dementia care. We are already providing it. We will comply with any legal mandate, but do want it to be practicable,” Brendan Williams, president and CEO of the New Hampshire Health Care Association, told McKnight’s. 

Williams said the organization wants the law to be more “practicable and prospective” for providers. One change providers are pushing for would allow for the use of a variety of training resources for staff members and not just rely on the Alzheimer’s Association curricula, as the current law requires. 

He argued that “no additional funding accompanied this new mandate for its Medicaid share-of-cost.”

“So we are wary of new unfunded mandates that may make it harder to recruit and retain staff.  An early state implementation draft would apply the new law even to volunteers,” Williams said. 

Williams added that the law is redundant, noting that federal regulations already require facilities and staff members to undergo training and provide “proper dementia care” to residents. 

He also noted that New Hampshire state law requires licensed nursing assistants to undertake 100 hours of training, which includes training in emotional support for how to respond to residents with dementia or cognitive impairments. 

“Hopefully, we can get to a result here that works for everybody,” Williams said. 

The foregoing demonstrates that the year 2020 is likely to be a year in which nursing home providers, legislators, regulators, and senior advocacy groups jockey for position in an effort to reform nursing home care to improve quality and accountability.  

__________________________________________________________________
The foregoing article draw from several articles, the most important being a pair of articles published in McKnight's Long-term Care News

Wednesday, January 1, 2020

Guardianship System Leaves Most Vulnerable Unprotected

Guardianship, the legal process of taking away an adult’s rights to make life decisions, is intended to protect vulnerable people from neglect and abuse.  The good intention,  however, is often unrealized as institutional health care (hospitals, nursing homes, and assisted living facilities) use the process to remove poor patients from hospital beds, sometimes against their wishes and the wishes of family members.  More, these institutions are often aided by local lawyers serving the legal system's bias for known and familiar institutional care options.  These are the conclusions of a year-long Richmond Times-Dispatch investigation that sought to  discover what happens to the patients after they’re discharged.  Simply, "[the] system...fails to provide the one justification for the power it wields – protection."

The guardianship system is a significant threat to a senior's independence, and is often used to frustrate a senior's intentions to remain independent of third-party control, and to age in place.  Guardianship abuse (utilizing the guardianship system to control or compel a senior), and  abusive guardians (guardians that threaten the physical and financial well-being of a senior) are common villains in stories of seniors institutionalized against their will. 

Guardianship is also a common subject of articles on this blog:

 The Richmond Times-Dispatch article, in its entirety, follows:

Richard Richardson

[Investigative Reporter Bridget Balch penned a heart-breaking depiction of the plight of one Richard Richardson}: 

Days after what would have been Richard Richardson’s 40th birthday, his three sisters stood in silence on a bridge in Bryan Park, where they’d played as kids, staring into the pond where they’d just scattered his ashes.

Around them, people were out enjoying the first cool day of October — playing Frisbee, biking and jogging — the kinds of things Richard hadn’t been able to do in his final years.

Jennifer, the middle sister, remembered a time years ago when she and Richard had been here with their kids. She laughed thinking about how Richard had joked about throwing his nephew into the pond if he didn’t behave.

That was before the accident, back when Richard was a fit, young father who rode his bike everywhere and practiced mixed martial arts.

But then, on Thanksgiving 2014, a fall from a second-floor balcony paralyzed him from the shoulders down.

Afterward, he had been shuffled from nursing home to hospital to nursing home. His serious medical needs and the fact that he was on Medicaid made it hard to find a decent place. He’d been most stable in the year he spent living with Jennifer, but after he started having seizures, he ended up back in the hospital.

“It was a terrible life for a person to have to live,” said Richelle Richardson-Hayes, Richard’s oldest sister.

He spent the last year of his life in a nursing home where, his sisters say, he often went hungry and was rarely moved out of his bed. They say the staff was rude to the family when they visited and spoke up for their brother.

It was a nursing home that he was sent to against his will.

While he was a patient at VCU Medical Center, he’d told the staff not to send him to the nursing home in Petersburg, about 45 minutes away from family who visited and looked afterSo the hospital system petitioned Richmond Circuit Court to have Richard declared incapacitated and to have the attorney representing the hospital appointed his guardian, giving him the power to discharge Richard and have him admitted to the nursing home despite his objections.

The court appointed Henrietta Cannon as Richard’s guardian ad litem, an attorney charged with investigating the case and representing the person’s best interests. Cannon was the guardian ad litem in almost 90% of all VCU Health System guardianship cases from 2014 to June 2019. She died in May, before the Richmond Times-Dispatch could talk to her.

Richard insisted to Cannon that he was not mentally incapacitated and that he did not need a guardian. In her initial report to the court, Cannon said that his medical records didn’t indicate any mental incapacity, and a VCU psychiatrist said that he seemed to have the ability to make his own decisions. Still, Cannon wrote that Richard’s apparent inability to “execute a plan for his discharge” from the hospital did make him incapacitated and that he’d be helpless without a guardian. him. The sisters had been working on getting an apartment where Jennifer and their mother could take care of him again, but it was taking some time. And Richard already owed the hospital $86,000 that Medicare and Medicaid had refused to pay, according to court records.

Before Richard’s court hearing, Cannon wrote in her report that she called Richelle and left a message with the person who answered the phone, but she never heard back. Richelle said she never got the message.

Without speaking to Richard’s mother, three sisters or two adult sons, Cannon recommended that VCU’s attorney, R. Shawn Majette, be appointed Richard’s temporary guardian.

And so he was.

Majette had him promptly discharged to the Petersburg nursing home. When Richard died 16 months later, medical records show that he had heart failure, kidney failure, sepsis, malnutrition and at least nine bed sores.

While Virginia guardianship law lays out certain protections intended to safeguard individual rights, a yearlong Richmond Times-Dispatch investigation has found that, in Richmond Circuit Court, these safeguards regularly falter as scores of people lose their rights to make decisions about their medical care, where they live and how their money is spent. In more than 150 cases over the past six years, those rights were given to an attorney with ThompsonMcMullan law firm, which represented 95% of health care providers asking the court to take away the patient’s rights, often without the patient being present at the hearing nor having a defense attorney to represent them in the brief court proceedings.

An analysis of more than 250 guardianship cases filed from January 2013 through June 2019 by health care providers in Richmond found that the city court exercises little oversight over private, professional guardians, both before and after the guardian is appointed.

In all guardianship proceedings, state law requires there be a guardian ad litem. The guardian ad litem is charged with visiting the person, informing him of the date and time of the hearing and letting him know that the hearing could take away some of his most basic rights. The person must be told he has a right to court-appointed counsel, to request a jury trial and to be present at the hearing. The guardian ad litem may speak with any family members or friends before the proceedings.

The guardian ad litem then puts together a report giving a recommendation to the judge. This report holds significant weight with the judge, particularly in cases where neither the person whose capacity is in question nor family or friends attend the hearing.

Many hearings last no longer than 15 minutes, according to court records and observation of six hearings by The Times-Dispatch.

One case file included an email exchange between the secretary for the ThompsonMcMullan attorney and the judge’s assistant regarding scheduling for the hearing. The attorney’s secretary asked if they could switch the hearing to a different day to accommodate the guardian ad litem’s schedule.

“That’s fine,” the judge’s assistant wrote. “But there is a jury trial set at 10 a.m. so he has to be here promptly at 9 a.m. and it can’t take more than 15 minutes (:”

ThompsonMcMullan always files a request to waive the legal requirement that the petitioner, in this case the health care provider, must mail a copy of the hearing notice and the petition to any known family of the allegedly incapacitated person at least seven days before the scheduled hearing, according to Majette, an attorney with the firm. This means that if a hearing date opens up within seven days, the hearing can be held within a week of mailing the notices.

The reason, he said, is that it’s often difficult to schedule a hearing and the hospital has usually already been searching for and attempting to contact any family members before the petition is filed.

“Where we are at the point in this law firm of getting the call [from a hospital to file for guardianship] is at the end of the beginning,” Majette said. “And by that, I mean we have had what I think — in any of the clients that I serve — [is] a superb effort to try every other alternative than this.”

Still, court records show that some family members, like the Richardsons, say they didn’t receive notice before the hearing impacting their loved one.

“[Richelle] said that she did not get notice and that’s bad,” Majette said. “I know we send it out every time ... I’m sorry she didn’t [but] I don’t apologize for the post office. We did what the law requires us to do.”

But Sally Balch Hurme, a Virginia-based elder law attorney and author who has served on the board of directors for the National Guardianship Association and advised on the drafting of the Uniform Law Commission’s model guardianship law, said that regularly waiving the seven-day notice requirement was an inappropriate use of the exception to the law. (Hurme is not related to the reporter.)

“The waiver is only if there is a case of an emergency,” Hurme said. “In this case, the emergency is only the hospital’s emergency because they are no longer getting paid by this patient and they want to discharge them. The person is well-cared for, the emergency is only of the hospital’s own making, therefore, the waiver of the seven-day notice is inappropriate and I would say in violation of the statute and the intent of the statute.”

One morning in March, Majette and Cannon stood before Richmond Circuit Judge W. Reilly Marchant for a double-header of guardianship hearings.

The first case was to decide whether Majette, representing VCU Health System, would be appointed the guardian of a 38-year-old man who’d been admitted to the hospital after a motorcycle accident.

We are trying our best to get him well enough to get discharged to a rehab hospital,” Majette said.

Cannon, the guardian ad litem, told the judge that the 38-year-old had “a habit of alcohol and substance abuse,” and that he might have been attempting to commit suicide when his motorcycle crashed. She said he was capable of making some decisions, but not the decision to go to a rehab facility.

He doesn’t have any family?” the judge asked.

“They’re alienated,” Cannon said. She recommended that Majette be appointed guardian so the man could be admitted to a physical rehab facility.

According to Cannon’s written report, the man had asked if his friend, who was present at the hearing, could be granted his power of attorney instead of having a guardian appointed for him, but Cannon wrote that a power of attorney “might not be sufficient to help with the admission to a rehabilitative facility nor to the expedited goal of obtaining Medicaid benefits.”

Virginia law says the court must consider less restrictive options to guardianship, including an advance directive and durable power of attorney, before resorting to guardianship. It also says that poor judgement alone is not sufficient reason to declare a person incapacitated.

Majette emphasized that the court order would give him complete discretion to resign if he saw fit. “I can file a Medicaid application, reimburse my client [VCU] to some degree and make him a more agreeable patient at the next hospital,” Majette said.

Majette then called the man on FaceTime to speak with the judge.

“Do you understand what we’re doing today?” the judge said, incorrectly telling the man that Cannon had been appointed his lawyer. “She’s talked to me about your tragic accident. … I think the proposal is we appoint Mr. Majette to be your temporary guardian and get you the medical care you need.”

“I am agreeable to it,” the man said.

“Mr. Majette does this frequently,” the judge said. “They’re very good lawyers and good people.”

The judge signed the order. Reports filed with the court months later would show that, after being discharged from the hospital, the man would check into an Extended Stay America hotel and refuse Majette’s services.

The next guardianship hearing began immediately.

“This is an ordinary — if there is such a thing — guardianship,” Majette said, describing the patient, a 67-year-old man with substance abuse disorder who had been brought in to the hospital with frostbite and gangrene.

Majette said his plan was to have the man admitted to a rehab facility and then to a nursing home. He would also retain his right to suspend his duties as guardian. “I can’t keep up with a fellow like that after he leaves the facility,” Majette said.

“This was a too-easy case,” Cannon told the judge. “He was not of this world. … Could not tell me where he was from.”

The judge said he always wondered what happened to the homeless people he often saw on the street. Cannon said the man had left his nursing home in a wheelchair to find a drink and had been begging on the street.

“Doesn’t sound very encouraging,” the judge said. “As long as you represent to me there’s sufficient findings, that’s fine.”

***

The guardian ad litem in 85% of all guardianship cases filed by a health care provider over the past 5½ years was Cannon, despite there being more than 50 attorneys certified to serve as guardians ad litem in Richmond.

Cannon’s obituary, published in The Times-Dispatch after she died in May, said that she served as guardian ad litem “for almost all of the guardianship cases for VCU Medical Center over the past 20-plus years.” VCU accounted for 76% of all health care guardianship petitions filed in the Richmond area from 2013 to 2018.

Court records show Cannon was paid at a rate of $100 per hour for her work on VCU Health System cases. In those cases, the health system paid her bill. On other cases, she was paid by the commonwealth of Virginia at a rate of $55 an hour for out-of-court time and $75 an hour for in-court time, rates set by the state Supreme Court.

State law requires the petitioner, in these cases VCU Health System, to pay the guardian ad litem fees except in indigent cases, when the fee can be paid through the state Supreme Court. However, although almost all of the VCU Health System cases were indigent cases, VCU still footed the bill.

Pam Lepley, vice president of university relations for VCU, said that the health system followed the law and was saving the state money by paying Cannon’s attorney fees.

“I would say ... that $100 an hour for a lawyer is very reasonable, especially a good lawyer,” Lepley said.

VCU Health’s chief medical officer, Dr. Ron Clark, said that he had never met Cannon.

“I assume she was someone that was known and respected by the court that they turn to on a frequent basis,” he said.

VCU Health System officials emphasized that it pursues guardianship for its patients rarely and only as a last resort and that, once the petition is filed, it is out of the hospital’s hands.

“The court makes the appointment,” Lepley said. “We don’t.”

Cannon frequently worked closely with the ThompsonMcMullan attorneys who represented not only VCU Health System, but Chippenham Johnston-Willis Medical Center and a number of nursing homes in the Richmond area. In most cases, she recommended that the health care provider’s attorney be appointed guardian, even in cases where she thought a family member or friend could also be an appropriate guardian, according to court records.

“The guardian ad litem is supposed to be an independent person and should not be compensated by the petitioner,” said Hurme, the Virginia lawyer who served on the board of the National Guardianship Association. “If the guardian ad litem is being paid by the hospital to grease the skids — to make the appointment of the guardianship go without a hitch — obviously the guardian ad litem is not going to recommend a need for counsel to represent the interests of the individual. You cannot serve two masters.”

Charles Ellis III

Charles Ellis IV had never heard of guardianship before he got the notice in the mail that ManorCare Health Services-Imperial had petitioned Richmond Circuit Court to have a guardian appointed for his father, Charles Ellis III.

In the weeks before the hearing notice, Ellis had received a couple of threatening letters from his father’s nursing home because the retirement income that he’d been collecting from his 30-year career as a city of Richmond firefighter had finally run dry. The letters said that if ManorCare didn’t receive the $37,569.72 that was owed them soon, they would evict him.

Ellis reached out to an ombudsman to figure out what to do. He was his father’s power of attorney and the agent of his advance medical directive. He’d tried applying for Medicaid twice, but both times was rejected because his father owned a home. It didn’t matter that the home was in serious disrepair and had gone into foreclosure.

Before Ellis could come up with a plan, the nursing home had hired Paul Izzo, an attorney working for ThompsonMcMullan, to petition the court to become the older Ellis’ guardian and conservator. Cannon was appointed the guardian ad litem. Ellis asked Cannon to allow him to continue to make his father’s medical decisions. The advance directive that the older Ellis had signed said, “I intend to avoid the necessity of guardianship or conservatorship proceedings by the creation of” the life-planning document, according to a copy of the document filed in court records.

Still, Cannon recommended that the power of attorney be suspended until Medicaid benefits could be obtained.

Since Ellis couldn’t attend the hearing, his aunt attended to speak up on the family’s behalf. Ellis said she cried and pleaded with the judge to allow the family to retain the medical power of attorney.

But Ellis said that the judge told her that it was going to be all or nothing. Izzo was appointed both guardian and conservator.

“That is the court serving as a debt collector,” Hurme said of the Ellis case. “The use of the guardianship system to save hospitals money and to collect nursing home debts, in my view, is an abuse of the court process.”

Majette said that, “No power of attorney is suspended unless there is cause shown.”

A few months later, the older Ellis was taken to Bon Secours St. Mary’s Hospital for pneumonia, his son said. He was in the intensive care unit for a few days before he was discharged back to the nursing home, but his son said he wasn’t consulted or informed about the discharge.

Within days, the older Ellis died at the nursing home.

Ellis believes that Izzo may have been too quick to allow his father to leave the hospital. If he had had the power to make the decision, he would have wanted the doctors to continue to treat his father.

“At that point it was out of my hands. I felt kind of helpless as a son not being able to speak on his behalf,” Ellis said. “I have mixed feelings on it. I feel like somewhere the system — whether that’s the state or the federal government — failed my dad.”

Christopher Malone, the president of ThompsonMcMullan, said a judge could look at the facts of a case, determine that the power of attorney was not acting in the best interests of the incapacitated person and choose to appoint one of their attorneys instead.

“But that’s not our job,” Malone said. “It’s the guardian ad litem [who] makes a recommendation and the court hears the evidence.”

***

Erica Wood, assistant director of the American Bar Association Commission on Law and Aging, has conducted national studies on public guardianship and guardianship monitoring. She said some courts and some states have implemented a guardian ad litem rotation to avoid the appearance of a conflict.

“If you just have the one guardian ad litem that’s always got the cases, it gives an appearance of a lack of an arm’s length relationship,” she said. “The idea of broadening it and opening it up — a rotation with some judicial discretion — is something to think about.”

In Florida, where every allegedly incapacitated person is appointed a defense attorney by law, there is a rotation in order to avoid the “pick my pal” scenario the courts have seen in the past, according to Ed Boyer, an elder law attorney who works guardianship cases there.

“When the same guardian ad litem pops up over and over, it looks like favoritism,” Boyer said.

The attorneys at ThompsonMcMullan said Cannon was selected by the court to serve as guardian ad litem so frequently because she was trusted by the court.

“We do not in this firm, the hospital does not, the petitioner … does not appoint the guardian ad litem. The court and only the court appoints the guardian ad litem,” Majette said, while acknowledging that the court usually did so at his request. “We, practically, tell the court that we have a person that the court can use … and the courts throughout the commonwealth decide who they know, who does a good job and who they are going to appoint. We propose, the court disposes. I don’t make that decision.”

Majette also said Cannon regularly made herself available to work at an hourly rate lower than what most attorneys are paid.

“Penny Cannon did phenomenally good work,” Malone said. “I’d stack up her guardian ad litem report against any I’ve seen. … You know when you have her on the case, you’ve got a 12-15 page report. I feel really good about that if I’m representing the hospital because I know that that job has been done well.”

In one case in which Majette was appointed a man’s guardian against the wishes of the man’s aunt, the aunt later hired an attorney and filed a counter petition to have her appointed her nephew’s guardian. The petition also requested that the court appoint a guardian ad litem other than Cannon, who had been appointed for the first proceeding. “Preferably [one] who does not regularly work on cases where Mr. Majette is the proposed guardian and conservator,” the petition said.

Majette filed a response defending Cannon, saying that she was familiar to the judges and that the aunt had “presented no basis to impugn the integrity of Ms. Cannon in the exercise of her duties as guardian ad litem for [the man] or any other individual.”

The court appointed a different guardian ad litem, Robert Lesniak, who later took on most of VCU Health System’s cases for a few months after Cannon’s death and was also compensated at the rate of $100 per hour, according to court documents.

Lesniak said that Majette, who he’s known for about 25 years, asked him to fill in as guardian ad litem on his cases after Cannon died earlier this year. He said that it’s difficult to find an attorney to work for $100 an hour, let alone the $55-$75 an hour paid by the Supreme Court.

While Cannon’s reports indicate that she always fulfilled her obligation to notify the person whose capacity was in question of their rights, she almost never recommended that they exercise them. None of the cases reviewed had a jury trial and only a handful had defense attorneys. Only occasionally was the person whose capacity was in question present at the hearing, and even then, usually by teleconference.

In a 2015 case filed by Bon Secours Health System with the Henrico County Circuit Court with a different guardian ad litem, the hearing was held in the patient’s hospital room at the guardian ad litem’s request.

Once a guardian is appointed, Richmond Circuit Court does little to ensure that the guardian is fulfilling the responsibility to protect a person’s best interests. For the most part, the clerk’s office only receives filings and compiles the record, prepares bonds and gives oaths,” said Edward Jewett, clerk of the Richmond courts, in an email. “We do not have any decision making powers in theses cases. In the clerk’s office, we do not do any monitoring of guardianship cases.”

The presiding judge of the Richmond City Court, Joi Jeter-Taylor, declined to be interviewed through Jewett.

***

It’s also a long and difficult process to have a person’s rights restored, according to Majette. “It takes a lot of time and it takes a lot of energy and it takes, sometimes ... a lot of money,” he said.

The disAbility Law Center of Virginia, which advocates for the rights of people with disabilities, takes on about a dozen cases to help people have their rights restored each year, but Colleen Miller, the center’s executive director, said there could be hundreds of people under a guardianship unnecessarily.

“We’re really limited in how many cases we can take on,” Miller said.

And the Virginia Indigent Defense Commission, which was created by state law to oversee public defenders and, according to its website, “to protect the Constitutional right to counsel for people who cannot afford to hire their own lawyer,” is not involved in guardianship cases.

The law requires that all private guardians submit an annual report to the local Department of Social Services and that the report be filed with the court that granted the guardianship.

But annual reports were missing from court files in at least 50 court cases reviewed by The Times Dispatch. Most of the reports that were filed contained little detail and often indicated that the private guardians had rarely or never visited their wards during the year.

The Richmond Department of Social Services has never identified an abusive or neglectful guardian based on reviewing annual guardianship reports and has not recommended to the court that a guardian be removed since at least January 2013, according to Shunda Giles, the department director.

Wood, of the American Bar Association, said Virginia’s guardianship laws are strong on paper, but that it’s the only state in the nation that does not require the guardianship reports be monitored directly by the court. Instead, they go to the local department of social services.

Across the state, social services workers have seen a 33% increase from 2014 to 2018 in the number of guardianship reports they are tasked with monitoring, according to the state Adult Protective Services 2018 annual report.

At the same time the demand for attention and services has increased, funding has stayed almost static, said Paige McCleary, APS director.

The social workers are also limited in how much oversight they can provide based on the annual guardianship reports.

“The difficulty is these are self-reports by the guardian,” McCleary said, adding that many times, the only way the worker can tell if there’s abuse or neglect of a person under guardianship is if a complaint is made to APS.

Gail Nardi, who was previously director of APS for nearly a decade, said that the lack of funding meant that many case workers have to juggle high caseloads and few have the time to closely monitor guardianship reports.

“I — and anyone else who cares about the well-being of elders and adults with disabilities in our communities — would hope that those reports get the scrutiny that they deserve,” Nardi said. “It is not my experience that that is the case.”

Pamela Teaster, a professor of gerontology at Virginia Tech and a national expert on guardianship, said the safeguards in Virginia law are lacking and that relationships within the court are too friendly to ensure due process.

It’s a problem that faces almost every state in the nation.

“Unfortunately and too frequently, the fate of people under guardianship ... is poorly monitored in sufficient, meaningful, and diligent ways,” Teaster wrote in her testimony before the U.S. Senate Special Committee on Aging in April 2018. “This inattention threatens to unperson them, leaving them open to exploitation, abuse, and neglect. The awesome power over highly vulnerable adults wielded by the guardianship system … demands adherence to the accountability protections already in place, but that are not well implemented ...”

Although an estimated 1.5 million people in the U.S. were under guardianship in 2018 — a number likely to grow as the population ages — no state maintains a list of those people, making it “impossible to have an appropriate level of accountability for each person who has a guardian,” according to Teaster.

The Senate Special Committee on Aging published a report in November 2018 outlining how states could strengthen their guardianship systems.

“Aside from incarceration or civil commitment, potentially no other court process infringes upon an individual’s personal liberties more significantly than the appointment of a guardian,” the report says. “In order to protect individuals subject to guardianship from abuse, exploitation, and neglect, governments and courts must be vigilant in their enforcement of laws and procedures that provide oversight of these relationships. While all states have laws designed to protect due process rights and to ensure that guardians are performing their fiduciary duties, these laws are not always consistently enforced, and more must be done to protect individuals subject to guardianship.”

The report found that there was a lack of national and state data on guardianship, making it particularly difficult to identify trends and make policies to address problems.

Still, some states are trying to improve their oversight of guardianship cases.

Nevada enacted a wave of reforms in 2017 — including requiring that the allegedly incapacitated person have a defense attorney — after an article in the New Yorker exposed one professional guardian in the state who had used a court order to seize guardianship of an elderly couple and control of their assets without advance notice to them or their adult daughter, according to the Senate report.

The state now has a permanent guardianship commission that investigates problematic guardianship cases. Last year, the commission investigated 165 guardianship cases and identified $2 million in estates that were at risk of loss due to mishandling or exploitation, according to Kate McCloskey, Nevada’s guardianship compliance manager.

In 2016, Texas established the Guardianship Compliance Project, a special office dedicated to auditing guardianship cases to determine the effectiveness of existing safeguards. The auditors found that 41% of cases were out of compliance with state law, including missing required annual reports and financial accountings.

Minnesota tracks all guardianship transactions. Texas passed a law in 2017 requiring all guardians to be registered in a central database. Pennsylvania is working to launch a statewide guardianship tracking system and Indiana has a 60-county guardianship registry.

“The problem is not with the state of the law as written but as practiced,” wrote Patricia M. Cavey, a Wisconsin-based elder law attorney, in a 2000 article for the Marquette Elder’s Advisor Law Review. “I have had the opportunity to work as a social worker and lawyer in a state with very progressive mental health laws, yet for almost two decades, I have shared many experiences with attorneys and advocates in states with much less ‘progressive’ laws. Over the last 10 years, many states have modernized their guardianship and adult protective service statutes. Few states fail to provide the theoretical right to either a lawyer for the defendant or a guardian ad litem. However, the benefits of good model statutes or case law protections are not realized for defendants unless the participants in the process know, follow, and enforce the law.”

In many places, like Richmond, whether a person is truly protected lies largely in the hands of the court system — a system that the attorneys at ThompsonMcMullan know well.

“I think I have the confidence of most courts throughout the commonwealth,” Majette said. “I hope I do.”

***

Once Richard Richardson’s family found out that VCU Health System and the court had bypassed them to get Richard discharged from the hospital, they were furious. His sister Richelle contacted Cannon and asked her how she could get guardianship of her brother.

A second hearing was scheduled, and Cannon visited Richard again to decide what would be best for him.

This time Richard asked to have an attorney appointed for him, but Cannon said in her report that, because his sister was planning to attend the hearing, she didn’t think that was necessary.

“When you think about the gravity of having your rights taken away from you, I would think you’d need some legal representation,” Richelle said. She said she didn’t know that her brother had told Cannon that he wanted an attorney until months after Richard’s death because she wasn’t provided a copy of the report before or at the hearing.

Richard also told Cannon he’d like to be present for the hearing, but Cannon wrote in her report that transporting him to the courthouse “cannot be easily done” and that including him by telephone conference also wasn’t possible “due to the present lack of a telephone adaptable for that purpose.”

Cannon spoke with Richelle and wrote that she believed that Richelle basically had her brother’s best interests at heart, but didn’t think that her plan to eventually have her brother brought to live with her mother, Jackie, and sister, Jennifer, was advisable. She recommended that, if the judge should decide to appoint Richelle guardian, the court order include a mandate that Richard remain in a nursing home unless Richelle could present the court with a “suitable” discharge plan.

When the court order was signed, Richelle was just relieved to be able to make decisions for her brother again. She wasn’t a lawyer. She’d never been through guardianship proceedings before. In spite of how she felt she’d been treated by the hospital staff, she trusted that a health system like VCU would be fair, and that the judge would protect her brother’s rights.

She didn’t realize that the court order she’d signed said that Majette could override her as guardian at VCU Health System’s request, or that she wouldn’t be allowed to make any medical decisions for Richard in disagreement with his attending physician at the nursing home where Richard would spend his final year.

***

Advocates in Virginia and across the country have called for stronger protections for people brought to court for guardianship proceedings.

“Guardianship is the most restrictive option that we have for assisting somebody with a disability to make decisions,” said Miller, from the disAbility Law Center of Virginia. “There are many, many other options available that don’t have to take away their [rights]. … We really believe that guardianship should be a last resort in every situation and we also think that that is what the law requires.”

Miller said that supportive decision making — allowing a person to retain their rights but putting resources in place to help him make those decisions — should be used more.

David Hutt, an attorney with the National Disability Rights Network, said that national reform efforts are placing a greater emphasis on the guardian seeking out the interests and wants of the person under guardianship. This requires frequent interactions between the guardian and the person.

He said that courts could do more to make sure that people receive due process before they have any rights taken away, including ensuring there is advance notice to the appropriate people, that there is a fair hearing, that the judge sees the person, and that less-restrictive alternatives are seriously explored.

“Courts are too quick to order guardians,” Hutt said.

Wood said that the American Bar Association approved a new model law on guardianship reform to use as an example for state legislatures two years ago, but only two states — Maine and Washington — have adopted it.

“There’s a very strong emphasis on less restrictive options,” Wood said of the model law. “The judge cannot find that an individual is incapacitated and order a guardian without fully examining less restrictive options.”

Miller said that the disAbility Law Center of Virginia supports efforts to better educate judges in the state about the limits of guardianship and the alternatives that exist.

In 2016, the Supreme Court of Virginia launched its Working Interdisciplinary Networks of Guardianship Stakeholders, or WINGS, a group that brings together representatives of the courts and community to work on improving guardianship practices and providing less restrictive decision-making options. The group has worked on improving state-level data collection on guardianships, creating a tutorial, FAQ document and pamphlet on the guardianship process to be given to people wishing to be appointed a person’s guardian, and advocating for a change in the law enacted this year that now allows the court to issue a summons to a guardian if the annual report is not filed on time.

But according to Cavey, the Wisconsin elder law attorney, the only chance of truly protecting the rights of the vulnerable is to abandon the assumption that all parties in guardianship proceedings are looking out for the incapacitated person’s best interests and to create an adversarial system with a strong emphasis on defense, much like in criminal court, according to her article, “Realizing the Right to Counsel in Guardianship: Dispelling Guardianship Myths.”

“The only hope for a constitutionally sound guardianship system is to ensure that those with the most at stake, the guardianship defendants, are able to access real advocates,” Cavey wrote. “For those of us who will age and be subject to this system, we hope that our lawmakers understand the conflicts and self-interest of those who advocate the [disassembling] of the adversary system. Since we all age, it is in the self-interest of practitioners and policy makers in the field to develop systems in which advocacy is fostered. Very good words on paper are just not enough. There is too much at stake to hope for self-activating justice because the ‘help’ we get isn’t always the ‘help’ we need or want.”

***

Richard Richardson wasted away in his final months at Petersburg Healthcare Center.

He’d complain to his sisters that he wasn’t being turned to prevent bed sores, that he wouldn’t be fed for hours and that his roommate would crank up the heat and stifle him.

The staff wouldn’t allow his wheelchair in the building, so he was often left in his bed, according to his sisters. Even when he seemed to be near death, the nursing staff would insist that only two people could visit him at a time, they said.

Fred Stratmann, a spokesperson for Petersburg Healthcare Center, said he couldn’t speak about a specific case because of patient confidentiality, but said that the center encourages its administrators and staff to be sensitive to the needs of the residents.

Richard would go back and forth about whether he wanted to start hospice.

Before his accident, he didn’t believe in God. After he became paralyzed, he became a Christian for a while, but his faith waned again with the way he was treated by the hospitals and nursing homes.

He told Richelle he didn’t really know what happened after death, but he thought anything had to be better than what he was going through.

But as he and his family discussed the possibility of stopping his life-sustaining treatment toward the end of 2018, he said he wasn’t ready. He wanted to wait to see if his favorite football team, the Los Angeles Chargers, made it to the playoffs.

He held on to see them win one playoff game before losing to the New England Patriots in January.

Later that month, his condition worsened. The nursing home sent him to Southside Regional Medical Center in Petersburg.

In the beginning of February, Richard was nonresponsive, but he started to come back within a few days, Richelle said.

In his weeks at Southside Regional, Richelle felt like the hospital staff continually tried to exclude her from conversations about her brother’s care. One time, a staff member said they’d already called Majette, who was listed on Richard’s medical records as his next of kin, about treatment options. Richelle had been Richard’s guardian for a year.

“How are y’all calling Shawn Majette?” Richelle asked. As far as she was concerned, Majette had been removed from speaking for Richard at the court hearing the year before when she was made his successor guardian.

Majette said that he never acted as Richard’s guardian after Richelle took over. A spokesman for Southside Regional Medical Center said that lawyers at Majette’s firm have been appointed guardians of patients after the medical center has petitioned for guardianship on occasion, but he had “found no facts that support the narrative” that Richelle described.

Richelle sent the hospital a copy of her court order, but she still felt like her right to speak for her brother was not respected.

Richard’s family decided to have him transferred to Retreat Doctors’ Hospital in Richmond to be placed on hospice care so his family would be nearby to spend his final days with him. But before Richelle could complete the arrangements, the medical staff at Southside Regional put Richard on comfort care — ceasing all efforts to keep him alive — without her permission, she said.

When a doctor realized two days later that the family hadn’t consented, he ordered the staff to restart Richard’s regular medical care, Richelle said.

The same day, a hospital staff member called Richelle and told her that they would be transferring Richard to Retreat Doctors’ Hospital.

Richard’s mother, three sisters, sons, nieces and nephews had planned to meet him at the hospital that night, but they’d never get the chance to say goodbye.

He died on the way.




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