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

Berkeley, California (CNN) — Over a decade before her husband’s death, Linda Tung was already concerned with estate planning. Their daughter, Rachel, was born with cerebral palsy, a neurological condition that can greatly hamper mobility. Planning for Rachel’s financial future, one without the everyday care of a parent, has always been top of mind.

Tung, 75, and Rachel, 36, live in the downstairs unit of a house walking distance from San Francisco’s Golden Gate Park. Tung’s son and his family live in a separate unit upstairs. When the family’s will is activated, Rachel will inherit her share of this house through what is known as a special needs trust, which the Tungs set in place in 1997.

Inheriting the house outright, without such a trust, could cause Rachel to lose the public benefits on which she depends. Because of her disability, Rachel doesn’t work.

“Housing is a really big concern, because when we’re gone, who’s going to take on this job?” Tung said. “It’s a whole big picture, and it’s all on the parents.”

Like Tung, many parents taking care of adult disabled children are well past retirement age and experiencing their own mobility challenges. By 2050, the number of Americans over the age of 65 will increase by nearly 50%, according to projections by the Population Reference Bureau.

At the same time, people with disabilities also are living longer and aging at home instead of in institutions, according to experts like David Goldfarb, policy director at The Arc, a national disability advocacy organization.

“If you go back 50 years, no one expected many people with disabilities to live very long,” Goldfarb said. “And now, the good news is, they’re living much longer, thanks to advances in health care and public health. But the supports and services are not there to meet them.”

The situation can create a crisis for families as they scramble to find in-home or long-term care for two or three disabled family members. Many are turning to advocates and attorneys to better prepare for this longevity.

“They’re looking to find a way to fill the gaps when they’re gone, because nobody can do it like mom and dad,” said Mercy Hall, a San Francisco attorney with the Hall Law Firm, which specializes in disability planning.

An increasingly popular option is a special needs trust, or SNT.

Under Supplemental Security Income and many state Medicaid thresholds, individuals with disabilities enrolled in these programs can’t hold more than $2,000 in their bank accounts, a limit that has not changed since the 1980s. They also can’t own resources worth more than this limit, with several exceptions, including a single residence and vehicle. Generally, things such as an additional wheelchair-accessible van or an investment portfolio can’t be held in the name of the person with a disability reliant on these benefits.

An SNT gets around the resource limits by handing over assets to a trustee, who is legally bound to use the funds strictly for the benefit of the person with a disability, known as the “beneficiary.” Trustees make decisions guided by a letter of intent, written when a trust is established.

Lawyers say the demand for such trusts is increasing.

“I think these trusts are becoming more and more necessary because the system is so unstable,” said attorney Stephen Dale with The Dale Law Firm in Pacheco, California, which specializes in estate planning for families with disabilities. There are various kinds of trusts, which can provide not only a safety net but also guidance to navigate the confusing system of government-supported care.

To navigate this system, parents often become experts in the bureaucracy of social services.

After a career as a graphic artist, Tung parlayed the expertise she learned from caring for Rachel into an administrative job with the organization Support for Families of Children with Disabilities. That isn’t unusual; many professionals in the disability community are parents of disabled children.

“A lot of us are drawn to that work because we want to help other parents,” Tung said.

Amy Tessler followed the same path. After 30 years as an industrial engineer, she became the education and outreach coordinator for The Dale Law Firm — the same firm that had created an SNT for her son, Scott, who is 28 and on the autism spectrum.

Tessler, 66, took the job to deepen her involvement in the disability community. In the meantime, she has learned the ins and outs of the SNT she and her husband set up for Scott when he was 9 years old.

More important than the document, she said, are the people parents select to carry it out.

“Just because you have a document doesn’t mean you have a plan for how your child is going to be cared for in the future,” she said. “Picking the right team to administer the special needs trust is what’s critical.”

Tessler selected a fiduciary — the professional trustee tasked with managing finances for a beneficiary — with an in-house care management team to take over both financial management and care services once she and her husband are no longer able to provide support themselves.

“There’s lots of professional fiduciaries out there,” Tessler said. “But I could only find one that was actually able to meet my needs.”

Tessler’s fiduciaries — Jewish Family and Children’s Services — already meet with Scott at least twice a year.

“They were ready to have a relationship with my son and myself, and the rest of my family now,” Tessler said.

Scott lives at Sunflower Hill, a residential community for adults with disabilities in California’s East Bay.

He keeps a full schedule, Tessler said, including an adult day program and a host of activities, some of which are facilitated by Sunflower Hill. Scott participates in the Special Olympics, tennis, yoga, walking club, karaoke nights, cooking classes and weekly potluck dinners.

He lucked into the apartment a few years ago when a friend of his was selected in a lottery. Scott moved in as a roommate.

Right now, he goes home to Oakland on the weekends but plans to live eventually at Sunflower Hill full time.

Because of his parents, Sunflower Hill and public benefits, Scott has a strong support system. The SNT is in place to pay for unmet needs and enhance his quality of life after his parents die. It also could help Scott through transitions, like changes in public benefits or housing.

“We don’t have a guarantee that what he has now is going to continue for the rest of his life,” Tessler said.

She updates the trust’s planning documents every six months to reflect changes in her son’s life.

“In a lot of ways, the trust is an alter ego for the parent,” Dale said. “A properly done trust is going to focus on more than just the public benefits.”

Avoiding pitfalls

Choosing the right trustee is important.

“You’re giving up your money,” said Goldfarb, policy expert at The Arc. He encourages families to ask whether the organization trusted with the funds conducts financial audits and has an independent board.

Rather than choosing a professional, it is common to appoint a family member, like a sibling, as trustee. However, making a sibling the gatekeeper of the money can create an uncomfortable dynamic, said Hall, the San Francisco attorney. And a trusted family friend might not have the skills for it.

“It’s better to let the siblings continue to be siblings, and not take on the role of gatekeeper to the money,” Hall said. “You might have somebody who has the biggest heart in the world, and they may not be that good with finances.”

Families frequently go to court because of disagreements over an SNT.

To avoid that, Dale encourages his clients to designate a family member as trust protector instead of trustee. A trust protector has the power to remove and replace a trustee if necessary.

Managing your money manager

Sabrina Padillo is a social worker and case coordinator for the care management company Rehabilitation Care Coordination in San Diego. She works on the other end of SNTs — overseeing the care of an individual as instructed in a trust document.

Padillo sees some clients weekly, others yearly, to coordinate medical care and government benefits. Sometimes she helps clients through life transitions. For example, she’s helped clients move to Thailand, and another to evict squatters from their house.

“Their job is to manage the finances,” Padillo said of fiduciaries. “Our job is to manage the person.”

Without the right expertise, fiduciaries have sometimes based decisions more on finances than needs, she said, such as purchasing a two story-house for someone who has trouble with stairs, or an SUV in place of a wheelchair-accessible van.

Families, she said, sometimes misunderstand the limitations of an SNT.

“We’re not taking the whole entire family to Disneyland,” Padillo said.

What kind of trust should I choose?

The Tungs and Tesslers set up third-party SNTs for Rachel and Scott. Third-party trusts are often established well ahead of when they are needed and are funded once or multiple times by someone other than the person with the disability, such as their parents, extended family or friends.

The decision to set up a trust often happens at around age 18, when many individuals with disabilities are eligible for Supplemental Security Income and Medicaid for the first time. This marks the beginning of what is known as the transition years in which families begin to exit the school system.

Third-party trusts can take weeks to months to set up, depending on a range of circumstances.

But SNTs also can be set up in a pinch, as first-party trusts, often to hold money from lawsuit settlements in medical malpractice cases.

A first-party trust can be funded directly by the person with the disability themselves, but comes with more restrictions, and is generally subject to Medicaid payback after the beneficiary dies. This means the state can claim whatever is left in the first-party trust up to the amount Medicaid paid on the behalf of the person with the disability.

“I’ve had clients who are in their 80s, and their child dies, and they have nothing. Literally nothing,” Hall said.

The Urbatsch Law Firm in Berkeley, which focuses on special needs estate planning, charges a flat fee that can range from $5,000 to $8,000 to set up a trust. Lawyers with expertise in SNTs caution against setting up lower-cost trusts with nonspecialized lawyers who might not tailor trust documents to individual cases or be able to connect families to other resources in the disability community.

For families with a smaller amount of money to save, typically under $60,000, pooled trusts might be an appealing option. These SNTs have lower startup costs and are managed by nonprofit organizations. They can be either first- or third-party trusts.

The Golden State Pooled Trust, operated by The Dale Law Firm, has an upstart cost of around $1,500.

“I personally think the future is pooled trusts,” said Dale, who is also the president of the Alliance of Pooled Trusts — an organization that establishes best practices in the industry.

Dale emphasized that these trusts are not just for individuals with less money to hold, but for anyone who would like to tap into the team of resources built by the pooled trust nonprofit.

ABLE accounts and SNTs

Achieving a Better Life Experience, or ABLE, accounts are another tool that can work with SNTs to maximize financial independence.

Passed in 2014, the ABLE Act allowed states to create programs where individuals with disabilities can start their own bank accounts to save and spend more freely. Unlike SNTs, ABLE accounts can be owned and accessed directly by the person with the disability.

They can hold up to $100,000 without impacting the public benefits. This year, the annual contribution limit is $18,000.

“A lot of what we’re trying to do is educate individuals on finances in general,” said Alisa Ferguson, program manager of Virginia’s ABLEnow. “These are individuals who haven’t been able to save.”

Without ABLE, benefit recipients often spend to keep their accounts below the $2,000 limit.

“Spending it down is what they call it,” Ferguson said. “Spending it on anything they can get their hands on — shoes, TVs, things you don’t necessarily need.”

ABLE Accounts are more liquid than SNTs. Virginia’s program includes a debit card, which allows for spending on everyday items like restaurants, trips to the pharmacy and clothes. Some programs also allow for the money to be invested.

SNTs can be set up to fund ABLE accounts.

However, like first-party SNTs, ABLE accounts may be subject to Medicaid payback after the individual with a disability dies.

Rachel’s future

Linda Tung handles Rachel’s finances. But when she is gone, that responsibility will fall to her son, who will be the trustee of Rachel’s SNT.

When her husband died in 2010, Tung took on more responsibility than she had anticipated caring for their daughter. The same month, Rachel aged out of the school system and started a new route at The Arc of San Francisco.

Two of Tung’s concerns for Rachel’s future are housing and care. Last year, she placed Rachel on two waitlists for supportive housing, but she believes it might take another five years for her to be offered a spot.

Mother and daughter are keen to start the transition sooner rather than later. Rachel is social, strong-willed and relishes her independence.

“I’m missing camp,” she said, shortly after coming home from the Santa Cruz Mountains summer camp that she has attended for more than 10 years. “I cried last night.”

Rachel and her mother share a love for San Francisco, its arts and its culture. “She’s definitely a city girl,” Tung said. Rachel agreed.

Artwork by mother, daughter and friends hang around the house. Tung frequents the Legion of Honor and de Young museums. Rachel prefers the Academy of Sciences but participates twice a week at an art program run by The Arc. Rachel met her new boyfriend at The Arc.

In her living room, Rachel draws smiley faces with markers. At the studio, she is working on a large acrylic painting. “She’s prolific,” Tung said. A few years ago, Rachel sold a painting in an exhibit on Castro Street.

The SNT is a piece of the plan Linda Tung is putting in place for Rachel to allow her the freedom to continue doing what she enjoys.

“You don’t want your kid to be 40 years old and you to be 80 and you die, and for the first time they don’t have you there. They are not in their own home, and they’re moved to some place with strangers. … Everything’s changed overnight,” Tung said.

“None of us want that to happen.”

Reporter Hannah Frances Johansson and photographer Amin Muhammad are with the Investigative Reporting Program at the University of California, Berkeley, Graduate School of Journalism. They covered this story through a grant from The SCAN Foundation.

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