In the United States, around 20% of adults live with mental illness, and around 1 in 20 Americans live with a mental illness that is considered serious, such as bipolar disorder or schizophrenia. The costs of this are enormous, resulting in an estimated $282 billion annually in lost income and care costs.
For individual families, however, the personal and financial costs can be much greater. Many parents with mentally ill children experience caregiver burnout, while concerns often run high about how a child experiencing a mental illness will fare when their caregiver is gone.
For example, let’s say Elana has been financially supporting her granddaughter Alyson for years. Alyson cannot live independently because of her mental health issues, nor can she hold a job. Unfortunately, Elana now has terminal cancer and she wants to make sure Alyson is provided for, but Elana doesn’t know how to do that.
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The good news is that experts say Elana has plenty of options to provide for Alyson’s needs for decades to come, assuming Elana has assets to leave behind.
Elana needs a durable power of attorney
Elana is focused on how her death will affect Alyson, but before she plans for what happens after she’s gone, she must plan for what could happen as her health worsens.
“In this situation, with a terminal illness, it’s important to have a durable power of attorney to authorize a trusted person who can handle everything for you should you become incapacitated before you pass,” Fred Taylor, the founding attorney of Bush & Taylor, PC, told Moneywise.
Without a durable power of attorney, there might be conflict over who will manage Elana’s estate and there may be no one with immediate authority to pay Alyson’s bills if Elana’s cancer progresses to the point where she is incapacitated.
Elana can avoid this by naming someone she trusts to access her accounts, pay her bills and continue providing for Alyson as instructed.
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A trust is essential for after death
While Elana must make plans for incapacity and end-of-life care, a post-death plan is also essential. And this likely starts with a trust.
“First and foremost, a special needs trust (SNT) should be established,” Barry E. Janay, Esq., Founder and Owner of The Law Office of Barry E. Janay, PC, told Moneywise.
Colleen Carcone, an estate planning attorney and founder of Carcone Law, PLLC., agrees that a trust is important, although she told Moneywise that “the type of trust that is appropriate will depend on the extent of your grandchild’s illness and if she is currently receiving any means-tested benefits, such as Medicaid or SSI.”
A SNT is likely the right choice if Alyson is receiving means-tested benefits, such as Medicaid or Supplemental Security Income (SSI), because “a supplemental needs trust will allow distributions for goods or services that will enhance the beneficiary’s quality of life while maintaining eligibility for means-tested benefits,” said Carcone.
If Alyson doesn’t qualify for income-capped benefits like SSI and Medicaid, Carcone still believes a trust matters, but it doesn’t necessarily need to be a special needs trust.
“If your grandchild does not qualify for means-tested benefits, leaving assets to a spendthrift or discretionary trust for her benefit would protect the funds and allow distributions for the support you have been providing,” said Carcone.
“There are a lot of considerations in setting up a special needs trust, including who to choose as a trustee and what restrictions or protections should be included in the SNT,” said Janay. “The trustee is a fiduciary and must act in good faith, fairly, and honestly, and under no circumstance engage in self-dealing. This person should be good with money and not easily succumb to pressure.”
Alyson needs a guardian
Finally, because Alyson’s parents play only a limited role in her life, Elana needs to take steps to help ensure someone looks out for Alyson’s interests after Elana is gone.
“A guardian should be considered if the grandchild’s illness means they cannot make decisions for themselves or lack the capacity to do so,” explained Howard Krauskopf, an attorney and legal expert for AskALawyerOnCall.com. “This is separate from a trustee who manages the assets in the trust. This person coordinates housing and medical care and has legal power over the life and management of the grandchild.”
Krauskopf said Elana should work with surviving family and express her preferences for a guardian. She should also provide a thorough letter explaining personal details about Alyson’s lifestyle so the guardian can maintain consistency.
He also said the trustee and guardian must be chosen carefully to ensure they can effectively manage the funds Elana left behind for Alyson’s comfort and care. That way, Elana can have the peace of mind that comes with knowing Alyson will always be provided for.
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Christy Bieber has 15 years of experience as a personal finance and legal writer. She has written for many publications including Forbes, Kilplinger, CNN, WSJ, Credit Karma, Insurify and more.
