Planning for Two Lifetimes: Helping Families Protect Loved Ones With Special Needs

For parents of children with special needs, planning for the future can mean much more than saving money. It can mean making sure a loved one continues to receive essential services and has the financial resources to maintain a meaningful quality of life after the parents are no longer able to provide care.

That is the focus of an upcoming online webinar, “Planning for Two Lifetimes,” which will explain two important financial planning tools for people with disabilities: Special Needs Trusts and ABLE accounts.

Jeannemarie Passaro, executive director of Pike Autism Support Services, said she hopes families will take the opportunity to learn about options that they may not fully understand.

“It’s one of those things parents don’t want to have to think about,” Passaro said. “But nobody knows when your time is up.”

The 30- to 45-minute webinar will be held online at 7 p.m. on Wednesday, Sept. 23. It will be presented by Michael Ringel, CPA, RICP®, CExP™, ChSNC, a Chartered Special Needs Consultant and author of Planning for Two Lifetimes.

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Protecting essential benefits

One of the most important issues families need to understand is how money and assets can affect eligibility for government benefits and services.

Passaro said a Special Needs Trust can allow money to be set aside for a person with a disability without placing those funds directly in the individual’s name.

“If you just have an individual with disability, and someone leaves them money, that can affect their services,” she said. “They could lose all their services and their benefits.”

Passaro described the situation using her own son as an example.

“If my son has any more than $2,000 in his bank account, he can lose his services because it goes through Medicaid,” she said. “So if my older brother or myself or someone were to pass away and leave him money, they can’t just leave it to him in his name. It has to be left in a special needs trust for him.”

The trust is then managed by a trustee. Passaro said the funds can help pay for things that contribute to a person’s quality of life.

“If he needs money to go away on vacation, that money can help pay for it. If he needs a new bed, that money can pay for it,” she said. “It’s just money that’s protected.”

Understanding ABLE accounts

The webinar will also discuss ABLE accounts, which provide another way for eligible individuals with disabilities to save money.

Passaro said many families may have heard of ABLE accounts but may not know when they are appropriate or how they fit into a broader financial plan.

“It’s been around for a few years, but when it makes sense to have it, when you shouldn’t have it, how much money can go into it—there’s a lot to learn about that kind of stuff,” she said.

She described an ABLE account as “a special savings account” that can provide another way to hold funds while protecting access to important services.

For many families, Passaro said, the larger question is how to provide financial support for a loved one who may have limited income as an adult.

“We’re talking about individuals that may not be able to necessarily work a full-time job,” she said. “These are people who are going to be living on a very limited income.”

Start planning early

Passaro emphasized that families should not wait until retirement or old age to begin planning.

“You could do this now,” she said. “Make sure that all those things are in place because maybe the person that you know will wind up taking care of your loved one when you’re gone, they’re not going to know about this.”

She said parents also need to make sure other relatives understand how to leave money to a family member with special needs.

“If you have a family and you have members that you know plan to leave money to your children, you need to let those people know,” she said. “If you have special needs, it needs to go into a trust.”

Passaro also pointed to guardianship as another important part of long-term planning for some families, particularly when an adult with a disability is unable to make certain decisions independently.

“Guardianship and special needs trust are two very important aspects when planning for your future for your child with special needs,” she said.

Knowing where to begin

For families who feel overwhelmed, Passaro said learning more is an important first step.

She recommends working with an attorney who specifically understands Special Needs Trusts because, she said, “not every attorney knows how to do that.”

Passaro has been familiar with this type of planning for about two decades. She said her own family established a Special Needs Trust after her mother passed away, using funds from a life insurance policy to help establish the trust.

Today, she believes the most important question families should ask is straightforward: “What kind of planning do I need to do to protect my child’s services?”

“If you lose that, you’re really in a mess,” she said.

The webinar is intended for parents of young children, families of teenagers or adults, caregivers, relatives and others involved in planning for the future of someone with special needs.

For Passaro, the goal is for families to leave the session with a clearer idea of what they need to do next.