NDY Public Comment To U.S. Senate Aging Committee About Guardianship & Its Alternatives

Not Dead Yet, the Resistance

July 19, 2018

Senator Susan M. Collins, Chair
Senator Robert M. Casey, Ranking Member
United States Senate
Special Committee on Aging
Washington, D.C. 20510-6400

Dear Senator Collins and Senator Casey:

This comment is submitted by Not Dead Yet, a national disability rights organization, in response to your June 20, 2018 request for comment on issues related to adult guardianship. We commend the United States Senate Special Committee on Aging’s recognition of the need for policymaking in this area. We strongly believe that the Federal government has a key role to play in guardianship reform, eliminating guardianship abuse and in promoting person centered and rights oriented alternatives to guardianship.

As your letter states, it is estimated that there are 1.3 million adults under guardianship in the United States. Yet, who among us, regardless of age or disability, would want a guardian if there is any conceivable alternative? The word guardian comes from “guard”. A person is guarded from himself. A person under guardianship must yield personal decision making authority to another. He may be denied the right to make fundamental choices about where and how to live, who to see, what his money will be spent on and what healthcare he will receive. In effect, a person is demoted to the status of a child, but without many of the protections a child might have. For example, a child must go to school and, hopefully, a teacher would notice if something were very amiss. It is easier to isolate an adult.

Even when a guardian acts in good faith, she may bring unconscious bias to the process. Decisions may be made that are at variance with the decisions that would have been made if based on the person’s value system, priorities and life experience.

We agree with Pamela Teaster, Virginia Tech Gerontology Center director, that instead of interminable guardianship, “Persons should enjoy supported decision making whenever possible and have their rights restored with all deliberate speed.” [1] Indeed, there is growing agreement among the advocacy and legal communities that supported decision making must be considered as a least restrictive alternative to guardianship. [2] Depending on the circumstances, supported decision making can be coupled with carefully drafted powers of attorney and revocable healthcare proxies.

Although models may vary, section 102(31) of the Uniform Guardianship, Conservatorship and Other Protective Arrangements Act (herein referred to as the Uniform Act) defines supported decision making as “assistance from one or more persons of an individual’s choosing: (A) in understanding the nature and consequences of potential personal and financial decisions which enables the individual to make the decisions; and (B) when consistent with the individual’s wishes, in communicating a decision once made.”

People who need advice or guidance in making decisions have richer, fuller lives if they are allowed more control over their destinies than those placed under guardianship. [3] They retain more autonomy as adults. They participate in society.

We ask that Congress do what it can to promote supported decision making as the standard for adults who need help in making critical decisions. An adult’s autonomy should never be taken away by guardianship unless there is clear and convincing evidence that the individual’s needs cannot be met in any other way. When guardianship is used, it must be subject to strict oversight. As discussed more fully below, we ask that Congress enact key provisions dealing with adult guardianship from the Uniform Act into federal law.

You have asked for input on four key issues.

There is a lack of reliable data on guardianship cases. You have asked for recommendations for collecting information about these cases to better inform federal, state and local officials.

OUR RECOMMENDATIONS:

We certainly share your concern about the lack of reliable data. We are especially disturbed about the paucity of information on how guardians make life-or-death healthcare decisions. Do the decisions made by guardians who did not know the person prior to guardianship tend to differ from those made by guardians who are family or friends? What circumstances lead to medical neglect or abuse? If the guardian is both an heir and healthcare decision maker, is there screening for potential conflicts of interest? Are there many guardians who make arbitrary decisions (such as routinely choosing a DNR) based on the person’s age or disability? How is the approach that a healthcare provider takes towards a patient impacted by whether a patient is subject to guardianship? Is there ever a vicious cycle going on? For example, would an emergency room doctor who does not know a patient assume that because the person is old, disabled and under guardianship that he has a singularly poor quality of life; and would a guardian, who also does not know the person well, use that judgment to make decisions about life sustaining care?

Guardians should be required to report the death of any person subject to their guardianship and the surrounding circumstances to the state’s protection and advocacy agency and that agency should have the power and resources to verify and investigate the facts as warranted.

We also believe Congress should fund a major public health study on issues related to healthcare and guardianship.

As for data on other guardianship issues, we note with approval that the Uniform Act would require a guardian to file a far reaching guardian plan and then file equally detailed reports annually (including steps taken to involve the person in decision-making and the use made of assistive technology). (Sections 316, 317) In addition, we urge that all states have a centralized database of the type Minnesota has where guardians annually file an accounting of expenditures made and assets managed. [5] Auditors can then look for red flags such as car expenses when the person does not have a car or lack of expense for diabetic supplies when a person is diabetic.

You have asked for recommendations for actions that can be taken to ensure that individuals subject to guardianship are protected from exploitation or abuse from their guardians.

OUR RECOMMENDATIONS:

From what little we do know, guardianship is ripe for exploitation and abuse. Is it any surprise? Traditionally, guardians had all the rights while persons subject to guardianship – elderly and/or people with disabilities who were already members of devalued groups – had few or no rights. Moreover, even though constitutional rights are involved, guardianship has been seen to be the domain of state law and local custom.

The G.A.O found that of the eight cases in six states it examined in 2016, $600,000 was stolen from elderly wards. [6] A review of 27,000 Texas guardian cases regularly found unauthorized expenses, gifts to family and friends as well as unsubstantiated and unauthorized expenses. [7]

A 2015 New York Times piece reported on the outrageous practice of nursing homes obtaining guardianship over patients as a means of bypassing ordinary ways of collecting debts and the protections that must be afforded to debtors, including the right to dispute a debt. The piece noted that 12% of the guardianship petitions filed in Manhattan over a decade were by nursing homes with the leading reason being to collect debts. [8] While the article did not focus on healthcare decisions, it did mention that (depending on jurisdiction) guardianship can supplant healthcare proxies. It is frightening to think of a nursing home intent on collecting debts being in charge of life or death medical decisions.

An equally shocking 2017 article in The New Yorker described what a local paper had called an “elder abuse racket” in Nevada. Professional (or perhaps they should be called profit-making) guardians manipulated the system to obtain guardianship over elderly persons whom they targeted. Having gained guardianship with the flimsiest of medical evidence at hearings of which the person or their family members had no knowledge, they forced their “wards” to move into assisted living facilities with no warning. They medicated them despite their wishes, sold their property, charged huge fees, and often prevented them from seeing family members. It was only after these cases were publicized that Nevada changed its law to give people a right to counsel at guardianship hearings. [9]

We note too that fees charged by guardians can be exorbitant and arbitrary. One woman was billed over $1000 for expenses supposedly associated with going to a basketball game. This included a fee of over $200 for assessing if the game would elevate the woman’s mood. [10]

Abuses can be reduced by enactment and enforcement relevant provisions of the Uniform Act. For example, the Act would prohibit anyone connected with a nursing home from being a guardian to a resident who is not a family member. (Section 309) It lists the circumstances where a third party should not comply with a guardian’s directive. (Section 123) It gives the person who is subject to a guardianship hearing the right to attend the hearing and the continuing right to counsel, both at the hearing and should the person seek to end the guardianship. (Section 305) Section 314(f) provides a clear standard for making healthcare decisions:

314 (f) In exercising a guardian’s power under subsection (a)(3) to make health-care decisions, the guardian must:

(1) involve the adult in decision making to the extent reasonably feasible, including, when practicable, by encouraging and supporting the adult in understanding the risks and benefits of health-care options;

(2) defer to a decision by an agent under a [power of attorney for health care] executed by the adult and cooperate to the extent feasible with the agent making the decision; and

(3) take into account:

(A) the risks and benefits of treatment options; and

(B) the current and previous wishes and values of the adult, if known or reasonably ascertainable by the guardian.

In addition, there are important restrictions placed on a guardian’s power. A guardian’s power to restrict a person’s right to communicate with others is very limited and a guardian, including a guardian who is a family member, cannot prevent a person from marrying without a court order. (Sections 310 and 315)

Above all, the overarching principle of the Uniform Act is that guardianship is a last resort to be imposed only when there is clear and convincing evidence that it is needed to protect an individual and that a less restrictive arrangement will not suffice. (Section 301)

You have asked for recommendations to ensure that guardianship is imposed only when necessary and that it is removed when no longer necessary.

OUR RECOMMENDATIONS:

You raised a vital concern. Guardianship is too often “til death do us part”. Yet many people go through periods when they lack decision making skills just temporarily. An elderly person can become disoriented from a hospital stay, overmedication or an infection and then “bounce back”. Some people can fairly quickly regain cognitive ability after a stroke or brain injury. A person with Down Syndrome might need help in managing money from a first job but as she gains life experience, her financial skills and judgment may increase. (Especially in the last situation, supported decision making would seem to be the best option.)

There are also many instances where mistaken assumptions are made about a person’s abilities. Too often it is thought that if a person is non-vocal, he is nonverbal and unable to understand or make and communicate decisions. (The Uniform Act’s many references to assistive technology are recognition of alternatives to speech). There have been cases as well where parents have been erroneously told that adult disabled children will only be eligible for services if they are placed under guardianship. [11] Then there are cases like “Monica’s” (not her real name). After she made one mistake of judgment – she gave one of her pain pills to a person who had repeatedly pressured her to share her prescription with him, which led to a chain of events that resulted in her being placed under guardianship. The court based its decision on the view that she was an incapacitated individual because she had a childhood spinal cord injury. One of the ironies of the decision was that at sixteen, Monica had been an emancipated minor. [12]

The Uniform Act does much to address these situations. Along with procedural protections, it directs the court to issue orders that encourage development of the person’s maximum self-determination and independence. When there is a demonstrated need for guardianship, the Act exhibits a clear preference for limited guardianship. (Section 301) The intent of the Act, as evidenced in many provisions, is that full guardianship of indefinite duration will be rare and that even when full guardianship exists, the person retains key rights.

Of course, the best defense is a good offense. People need to be educated that guardianship is not something that only happens to individuals who differ from them. Everyone can have circumstances spin out of control. Anyone can be at risk for guardianship but there are things that can be done to minimize this risk. People in general need to have powers of attorney and healthcare proxies. Everyone should give a thought to a supported decision making network that can be activated when needed.

Noting that procedures and practices can differ greatly from jurisdiction to jurisdiction, you have asked what best practices or other policies we would recommend to policymakers considering guardianship reform.

OUR RECOMMENDATIONS:

Guardianship is a drastic intervention. When imposed inappropriately, it equates to cruel and unusual punishment. The best practice and best policy is due process to ensure that guardianship is a last resort, rarely used, limited to the greatest extent possible and removed as soon as possible.

Since fundamental interests are at stake, it is intolerable that a person’s rights and protections can vary from state to state and even from county to county. Whether one has the right to counsel or the right of freedom of association, including the right to marry, should not depend on where one lives. A person’s wishes as evidenced by their own appointed healthcare proxy or power of attorney should be paramount in all parts of the country and not just in some. Less restrictive options to guardianship such as supported decision making should be the goal and standard everywhere.

The Uniform Act was drafted with input from both judges and advocacy groups. [13] It may not be the last word in guardianship reform but it is a huge leap forward. We have cited some but by no means all of its beneficial protections. Unfortunately, no state is required to adopt any or all of its provisions. We recommend that Congress work with key organizations in the aging and disability community to identify and enact the Uniform Act’s procedural protections and person oriented provisions as minimum requirements for all states to follow.

As mentioned before, we also believe Congress should fund a major public health study on issues related to guardianship and other surrogate healthcare decision making.

Congress should facilitate each state in setting up guardianship abuse hotlines and websites that educate the public about alternatives to guardianship as well as rights and protections for people in guardianship.

Finally, Congress should work with non-profit organizations on educational campaigns. The general public needs to be educated on alternatives to guardianship such as supported decision making. Lawyers need to be educated on how to be effective advocates in guardian cases. Judges and guardians need to be educated on their responsibilities in the 21^st century and how to recognize ageism and ableism in themselves.

If, as we hope, a bill arises from your committee, we would be happy to provide testimony. Thank you for your time and attention.

Sincerely,

Diane Coleman, JD, President/CEO
dcoleman@notdeadyet.org

Lisa Blumberg, JD, Consultant

ENDNOTES

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