When advisor Cynthia Haddad was a child, she heard the story of how her older brother — born with a developmental disability — was told in kindergarten that he shouldn’t be in school. Back then these issues were talked about in whispers and special needs children weren’t considered entitled to an education.

Fast forward to today, and Haddad is a partner with Special Needs Financial Planning, a specialty practice within RIA Shepherd Financial Partners in Winchester, Massachusetts. But it wasn’t easy to get this practice off the ground. When Haddad first approached firms with her intention to work specifically with families like hers, she was met with resistance and misunderstanding.

This was in the early 1990s and “almost 90% of them said to me, ‘Why would you deal with this population? The state takes care of them.’ Or ‘I don’t know anybody that has a kid with a disability,’” she says. “Of course, back then, a lot of people hid their kids.”

But her reasoning on the planning needs for people with disabilities and their families still rings true today.

Discouraged but persistent, Haddad eventually found a partner in fellow advisor John Nadworny — whose youngest child has Down syndrome — and was able to get the practice going. They have been working together for 25 years and in 2013 Nadworny’s daughter Alexandria joined the practice to work with next-gen clients.

The special needs world has evolved over the years and is now spoken about openly. People can ask for the assistance they need without facing a stigma. But when it comes to their financial options, caretakers for those with developmental challenges can feel lost.

ASKING THE RIGHT QUESTION
The first step to help these clients with financial planning is a basic question. Advisors shouldn’t be afraid to ask clients if they have a child or someone else they are caring for with special needs, says Morgan Stanley advisor Jeffrey Gerson. His daughter and nephew are both autistic, and he works with families in similar situations.

“[Advisors] are very quick to ask ‘are your parents alive,’” he notes. “They might go as far to ask is there anything we should know about [the client’s] health. … What they don’t often ask is ‘is there anything we should know about your children?”

This question can open a lot of doors and make navigating clients down a certain path much easier, eliminating surprises during the planning process.

Planning isn’t just a matter of talking to the parents, though. Multigenerational planning is key in these situations because siblings will usually take over the caregiver’s responsibility when the parents are no longer able to.

If there are no siblings or members of the family willing to take this on after the parents, then what?

One avenue advisors need to know about is the myriad public resources available to help these clients. And helping these families is a matter of finding a balance between clients’ personal resources and the government’s resources, Haddad says.

“Advisors really need to know the different types of government benefits available in their state, sometimes in their county and how individuals can access those benefits,” Haddad explains. “Some they may be eligible for, some they may be entitled to.”

There are entitlement programs funded by the federal government and non-entitlement programs funded by state governments. And to be sure, some families may not be aware of what they are eligible for. Sometimes, an option can be as simple as the disability insurance portion of Social Security.

Haddad met with clients with a special needs sibling — their parents had passed away several years before. Haddad asked the sister why they didn’t apply for Social Security disability and the woman’s response was that nobody had ever told them they could.

After notifying Social Security the family went from receiving benefits of $400 a month from SSI to $1,200 a month from SSDI.

In addition to understanding the specifics of a disorder, advisors need to be able to deal with complex legal, tax, trust, estate and governmental issues.

Some financial advisors may navigate away from this particular client for these reasons. But once those issues are understood, advisors have an opportunity to work with a potentially large group of clients.

How large? More than 40 million individuals in the United States are living with a disability — physical or mental — according to the Census Bureau. That’s more than 10% of the country’s population, or about as many people who live in California, the most populous state.

Moreover, recent estimates from the Centers for Disease Control suggest that about one in six children between the ages of three and 17, or 15%, have one or more developmental disabilities. These can include ADHD, autism, cerebral palsy, hearing loss, intellectual disability, learning disability and vision impairment.

About one in 59 kids in the U.S. have been identified with autism, according to the CDC. Each year about 6,000 babies, or one out of every 700 babies, are born with Down syndrome.

Trusts are another financial tool that can play a significant role in these plans, and advisors need to be cognizant of the different types of trusts as well as what state and federal governmental benefits can go along with that.

Advisors also need to know why the client has that type of trust or why the advisor is being asked to manage that type of trust by the family attorney.

“We have to know about the different types of supplemental needs trusts,” Haddad says. “Be it a first-party trust, a third-party trust or a pooled trust.”

Wells Fargo advisor Christopher Hunter’s wife teaches autistic children to swim. And after seeing some of her students, he realized the important role financial advisors can play in the lives of these families.

“Remember, you are planning for multiple lives when you’re doing your investment planning,” Hunter says. “You’re not [only] dealing with a retiring couple over a 15 or 20 year period, you’re dealing with that plus another possible 40 years of somebody else living on that same pool of assets.”

Amanda Schiavo

Amanda Schiavo is an associate editor for Financial Planning. Follow her on Twitter at @SchiavoAmanda.