Wills, Trusts & Estates Prof Blog

Special needs trusts bring peace of mind to aging parents of children with disabilities

Linda Tung, 75, has been planning for her daughter Rachel’s future for decades. Rachel, 36, has cerebral palsy and relies on public benefits, which could be jeopardized if she were to inherit assets outright. To prevent this, the family set up a SNT in 1997, which ensures Rachel will inherit her share of their home without losing access to crucial benefits.

The need for SNTs is growing as life expectancy for individuals with disabilities has increased, while the public support system has not kept up. Many parents, like Tung, face the dual challenge of aging while ensuring their disabled children are cared for when they are gone. Special needs trusts are designed to protect a beneficiary’s assets while maintaining their eligibility for government programs such as Supplemental Security Income and Medicaid, which have strict resource limits.

Attorneys specializing in disability planning stress the importance of selecting the right trustee to manage the trust. Some families choose professional fiduciaries, while others appoint a family member. However, this can create tension, as the trustee must manage finances, and conflicts over money are common. Pooled trusts, managed by nonprofit organizations, are becoming a popular option, offering lower costs and a team of professionals to handle trust management and care coordination.

Additionally, ABLE accounts, introduced in 2014, allow individuals with disabilities to save up to $100,000 without affecting their public benefits. These accounts provide more flexibility for everyday expenses and can be combined with SNTs to maximize financial security. For families like the Tungs, setting up these plans is crucial to ensuring their children’s well-being and independence in the future, long after they are gone.

For more information see Hannah Frances Johansson, "Special needs trusts bring peace of mind to aging parents of children with disabilities," CNN.com, September 13, 2024. 

Special thanks to Naomi Cahn (University of Virginia School of Law) for bringing this article to my attention.

Study Suggests Waiting Longer Before Withdrawing Life Support

Decisions regarding the withdrawal of life support for patients with traumatic brain injury are often pressured by hospitals around the 72-hour mark, though research suggests this may be too soon. A study by Mass General Brigham, published in the Journal of Neurotrauma, indicates that some patients might recover a degree of independence within months if given more time. The unpredictability of recovery makes it challenging for families to make informed decisions about life-sustaining treatment soon after an injury.

The study analyzed over seven years of data from 1,392 patients in U.S. trauma centers, focusing on those who required life support. By comparing matched pairs of patients—one group who had life support withdrawn and another who continued—researchers found that many who had life support withdrawn might have died regardless. However, a significant proportion could have achieved some level of independence within six months if life support had not been withdrawn. The study also noted that remaining in a vegetative state was an unlikely outcome six months post-injury, suggesting that early withdrawal might prematurely end recoverable lives.

Demographic analysis of the study revealed that patients who had life support withdrawn were typically older and less likely to be Black or Hispanic. The findings highlight the importance of delaying life support decisions to better predict patient outcomes and avoid a self-fulfilling prophecy where poor prognosis leads to withdrawal, increasing poor outcomes. Despite its small sample size, the study's insights are considered valuable. Experts like Dr. Walter Koroshetz stress that longer waiting periods allow for better understanding of recovery potential, emphasizing the need for cautious decision-making in life support withdrawal.

For more information see Gina Kolata "Study Suggests Waiting Longer Before Withdrawing Life Support", The New York Times, May 17, 2024. 

Special thanks to Lewis Saret (Attorney, Washington, D.C.) for bringing this article to my attention.  

Advance Care Planning for Guns: Owners Can Help Ensure Safe Use and Transfer of Weapons

Firearm Life Plan is a new tool that can help gun owners and their families plan ahead for safe firearm use and the transfer of firearms in the event of disability or death.

The plan, created by researching at University of Colorado and the Rocky Mountain Regional VA Medical Center in Denver, is a way for someone to prescribe what they want to happen with their firearms should they die or become incapacitated. Nearly 42% of Americans 65 and older live in households with guns, and up to 60% of people with dementia live in homes with a firearm.

The Firearm Life Plan emphasizes personal responsibility, safety, and the importance of being prepared. The Plan is comprised of four parts: 

1. A list of warning signs that might cause a gun owner to use the weapon inappropriately 
2. A conversation guide for friends and family who may be concerned about their loved one
3. An inventory guide, prompting owners to list where the firearms are stored and who should get the firearms when transfer is appropriate
4. A “legacy” section of the guide allows owners to share memories and stories about their firearms and pass along knowledge to the next generation.

The creators of the Firearm Life Plan hope that gun industry groups, shops, and shooting rangers will make copies of the plan available to their patrons.

For more information:

See Judith Graham, “Advance Care Planning for Guns: Owners Can Help Ensure Safe Use and Transfer of Weapons“, Kaiser Health News, April 27, 2022.

Special thanks to Lewis Saret (Attorney, Washington, D.C.) for bringing this article to my attention.  

Oregon ends residency rule for medically assisted suicide

In a settlement filed in the U.S. District Court in Portland, the Oregon Health and the Oregon Medical Board "agreed to stop enforcing the residency requirement and to ask Legislature to remove it from the law." 

The lawsuit challenged the constitutionality of the residency requirement for the law allowing terminally ill people to receive lethal medication. The lawsuit argued that the residency requirement violated the U.S. Constitution's Commerce Clause, "which gives Congress the right to regulate interstate commerce, and the Privileges and Immunities Clause, which forbids states from discriminating against citizens from other states in favor of its own citizens." Attorneys for Compassion & Choices also argued that the law is also unfounded because no other portion of their practice is affected by residency requirements. 

Advocates have stated that they will use the settlement to press other states with medically assisted suicide laws to also remove their residency requirements.

According to Kevin Diaz, an attorney with Compassion & Choices, the national advocacy group that sued over Oregon's requirement, "[t]his requirement was both discriminatory and profoundly unfair to dying patients at the most critical time of their life. . ."

On the other side, Laura Echevarria, who opposes such laws argues that a residency requirement is necessary to save Oregon from becoming the nation's "assisted suicide tourism capital."

According to attorneys at Compassion & Choices, the residency requirements create obstacles for patients and make their lives even more insufferable. This is especially true for patients in Washington who are seeking assistance in ending their lives. Although Washington has a similar law to Oregon's, it is much harder to find facilities willing to assist due to the large number of hospital beds that are in religiously affiliated health care facilities. 

According to Compassion & Choices, the hope is that people will be able to cross state lines in order to receive the help they are seeking, because they legal boundaries like a residency requirement should not cause them to suffer more than they already are. 

See Gene Johnson, Oregon ends residency rule for medically assisted suicide, Everything Lubbock, March 28, 2022. 

Article: Ministerial Acts

Rachel Leo recently published an article entitled, Ministerial Acts, Wills, Trusts, & Estates Law ejournal (2021). Provided below is the abstract to the Article. 

Cases sometimes describe some intermediaries as only acting ‘ministerially’. Mention of ministerial agents occurs in a wide range of different contexts. It has been used to refer to secretaries who merely physically deliver documents, an amanuensis who aids physically impaired individuals in signing documents, and stockbrokers who take specific instructions from clients in purchasing shares. Ministerial agency is also raised for different purposes. Sometimes, the question is whether the ministerial agent’s acts can be treated as the principal’s. It is also relevant to whether the purported delegation of ministerial acts contravenes the principle that delegated powers cannot be further delegated. Other questions concern whether the ministerial agent can be liable in conversion, for knowing receipt, or in unjust enrichment claims, or whether the ministerial agent owes fiduciary duties in respect of ministerial acts.

The aim of this paper is to investigate the concept of ministerial agency and its usefulness It focuses on three questions: (i) when does an intermediary act only ministerially?; (ii) is there a uniform conception of ministerial agency across different contexts and for different purposes?; and (ii) if not, should we be more precise in our usage of the term?

New California Law Eases Aid-in-Dying Process

Many cancer patients have to undergo toxic treatment just so they can spend more time with their loved ones. For some, the toxic treatments kill the cancer and it never comes back. However, for Leslie—and many others—the cancer will make an aggressive return. 

After Leslie was diagnosed with breast cancer, she underwent toxic treatment so that she could spend more time with her husband and two young children. Although Leslie was cancer-free for 18 months, "the disease returned with a vengeance" and "fractured her bones and invaded her spinal canal, bathing her brain in malignancy." 

In her final months, Leslie was in constant pain and essentially withered away. According to Leslie's husband, Bernard J. Wolfson, the thought of ending her suffering by ending her life didnt even enter their conversations. 

Wolfson stated that he has been thinking about his wife's last days as he looks into California's End of Life Option Act, "which allows terminally ill patients with a life expectancy of less than six months to end their lives by taking medications prescribed by a physician." 

Amanda Villegas of Ontario, California, and an advocate for updating the original law which "contains numerous safeguards to ensure that patients are not being coerced by family members. . ." Under the original law, which remains in effect until January 1, patients who want to die must make two oral requests for the medications at least 15 days apart. 

According to Villegas, "[the new law] will open doors for people who might. . .experience the same roadblocks. . .[w]hen you are dying, the last thing you need is to go through bureaucratic barriers to access peace." 

See Bernard K. Wolfson, New California Law Eases Aid-in-Dying Process, KHN, December 3, 2021. 

Special thanks to Lewis Saret (Attorney, Washington, D.C.) for bringing this article to my attention.  

Seeking Early Signals of Dementia in Driving and Credit Scores

Learning your odds of eventually developing dementia requires medical testing and counseling. However, everyday behavior may provide early warning signs of dementia. Examples of this everyday behavior include overlooking a couple of credit card payments, habitually braking while driving, and others. 

According to Sayeh Bayat, the lead author of a driving study funded by the National Institutes of Health and conducted at Washington University in St. Louis, "[e]arly detection is key for intervention, at the stage when that would be most effective." 

These efforts could help "identify potential volunteers for clinical trials, researchers say, and help protect older people against financial abuse and other dangers." 

Many once-promising dementia drugs have failed int rials, which researchers suggest may be due to the drugs being administered too late to be helpful. 

By identifying risks earlier, before the brain has sustained a great amount of damage, researchers could more easily find a pool of participants with "preclinical" Alzheimer's disease. Researchers could then test preventive measures or treatments.

See Paula Span, Seeking Early Signals of Dementia in Driving and Credit Scores, N.Y. Times, August 23, 2021. 

Special thanks to Lewis Saret (Attorney, Washington, D.C.) for bringing this article to my attention.  

Article: Legislating Supported Decision-Making

Nina A. Kohn recently published an article entitled, Legislating Supported Decision-Making, Wills, Trusts, & Estates Law ejournal (2021). Provided below is the abstract to the Article.

Supported decision-making is a process by which individuals who might otherwise be unable to make their own decisions do so with help from others. It has the potential to transform the lives of individuals with cognitive and intellectual disabilities by enabling them to function as legal actors, and not merely legal subjects. Fueled by this promise, by mounting concerns about guardianship, and by rhetoric surrounding the Convention on the Rights of Persons with Disabilities, states are rapidly adopting statutes that purport to enable and promote supported decision-making and advance the rights of persons with disabilities. This article shows how these statutes typically do neither. Rather, the statutes limit the rights of individuals with disabilities and place them at increased risk of exploitation. The article further shows that the wide gap between the concept of supported decision-making and its actual implementation in state legislation is the result of a confluence of political agendas, but that an alternative, person-centered approach is essential if supported decision-making is actually to empower individuals with disabilities. Finally, it outlines five concrete legislative approaches states could adopt—separately or in combination—to encourage supported decision-making that will actually advance the rights of persons with disabilities and reduce restrictive guardianships.

Disabled Recipients of Stimulus Aid Are Urged to Save Some in Special Accounts

People with disabilities are being encouraged to put away some of their stimulus aid in special accounts in order to keep their funds safe. 

These special accounts are called Achieving a Better Life Experience (ABLE) accounts. These types of special savings accounts were introduced in 2016 as a vehicle for people with disabilities to achieve "greater financial security and more independence." 

By using ABLE accounts, disabled people "can save money in the tax-favored accounts without risking the loss of need-based government benefits, like health insurance or supplemental income." 

As of now, 43 states and Washington D.C. offer ABLE. Although these special accounts have been around for a few years, interest in the accounts as grown exponentially due to federal pandemic relief putting more cash in people's hands. ABLE advocates have begun to "spread the word" about the usefulness of saving some or all of stimulus check funds in these special accounts. 

Here are a few incentives, or benefits, of taking advantage of ABLE accounts by placing stimulus aid funds in them. 

• People with disabilities often struggle financially and rely on federal aid, and cannot qualify for Medicaid or Supplemental Security Income if they have more than $2,000 in savings or other assets. These accounts help low-income disable people avoid this detriment. 

 

• Stimulus payments are not considered income, meaning you can spend the money how you please. However, if the money isn't spent within 12 months, it will be counted against asset limits and could disqualify disabled people from benefits. If this money is deposited in an ABLE account, it will not be considered when counting toward the $2,000 cap. 

 

• Disabled people can also used the ABLE accounts to save towards an apartment or a wheelchair-accessible car, not to mention many other necessities. 

In general, despite the low popularity of ABLE accounts in the last few years, they are becoming more and more useful, especially during the pandemic. 

See Ann Carns, Disabled Recipients of Stimulus Aid Are Urged to Save Some in Special Accounts, N.Y. Times, February 26, 2021. 

Special thanks to Matthew Bogin, (Esq., Bogin Law) for bringing this article to my attention. 

In Life, She Defied Alzheimer’s. In Death, Her Brain May Show How

"A woman in Colombia with a rare genetic mutation recently made the ultimate dontation to science." 

Aliria Rosa Piedrahita de Villegas had a rare genetic mutation that made it almost certain that she would develop Alzheimer's disease in her 40s. However, she did not begin experiencing symptoms until the age of 72. On November 10, she died from cancer, but the good news is that her dementia was not significantly advanced at the time, 

Neuorology investigators from the University of Antioquia in Medellin. have been closely studying Villega's and her family members in attempts to learn more about early-onset Alzheimer's disease. They found that there were several people whose disease did not develop until their 50s or 60s, which is a later development than expected. 

Although there were several outliers, they say none were as "medically remarkable" as Villegas, whom they knew as doña Aliria. 

Aliria had traveled to Boston where investigators conducted nuclear imaging studies of her brain "as part of an ongoing study of this Colombian family, the largest in the world with genetic early-onset Alzheimer's." 

The investigation revealed that Aliria had exceptionally large quantities of amyloid beta, which is a protein normally found in Alzheimer's patients. The researchers found that "something had interrupted the usual degenerative process, leaving her day-to-day functioning relatively preserved." 

Researchers at Harvard Medical School stated that although Aliria "carried a well-known mutation, unique to Colombia, that causes early Alzheimer's, she also carried two copies of another rare mutation that appear to have thwarted the activity of the first one." 

If researchers can unlock the secret to why Aliria's brain was able to fight off Alzheimer's for so long, it would be a very important discovery and a huge step forward against Alzheimer's. 

See Jennie Erin Smith, In Life, She Defied Alzheimer’s. In Death, Her Brain May Show How, N.Y. Times, December 11, 2020. 

Special thanks to Lewis Saret (Attorney, Washington, D.C.) for bringing this article to my attention.