As the father of a teenager with Down syndrome, Bill Harmon, president of corporate markets at financial advisory Voya Financial, knows firsthand the pressures and anxieties that plague the caregivers for special needs dependents. Employee Benefit Adviser sat down with Harmon at the recent NAPA 2018 conference in Nashville, Tennessee, to discuss how financial planners and benefit advisers can support employees who pull a second shift as caregivers to their special needs loved ones. Here is an edited version of that conversation.

EBA: What are some of the challenges facing employees who are also special needs caregivers?

Bill Harmon
Bill Harmon

Bill Harmon: When we give presentations to financial planners who want to work with special needs caregivers, one of the most staggering statistics is that one in six employees has identified themselves as a caregiver. The segment is bigger than you think, and people are very private about it. They're happy to talk about it, if someone pierces the veil, but they don't come right out and discuss it.

This is a very tired group. The average caregiver spends 24.4 hours per week giving care to their loved one, and 30% of them spend 40 hours a week. Who has 40 hours of discretionary time, after coming home from work, cooking dinner, helping with homework and taking the kids to practice?

EBA: How should financial planners and benefit advisers approach this segment?

Harmon: There're three starting points, if you will. First, is something that's very simple and should just be part of what you do as a wealth manager and that's beneficiary anticipation. If you make a mistake in a beneficiary designation, it can have big consequences in this world. You need to be able to advise appropriately on beneficiary designation.

The second item is coordinating with government benefits, specifically SSI and SSDI. In our sessions, we usually throw in a couple “did you knows?” and “here's what happens” to think about.

The third one is financial planning. I have three children, and I think of my financial planning differently than someone who doesn't have a child with special needs in the sense that I expect two of my three kids to grow up and become financially independent, and I have one who won't.

EBA: There's this big question mark about who will care for that special needs family member.

Harmon: Yes. Then you get into things like, do you have a special needs trust and how do you protect the assets? Where do you put their assets, so they don't become ineligible for government benefits? So, you scratch the surface. It’s delicate and complicated when we have these conversations.

At Voya Financial we created a Resource Center to say, “here's a checklist; here are things you should consider; here are different websites you can go to, because just finding the information can be daunting. We're trying to create a centralized place that this army of financial advisors can go to get the resources, figure out what questions to ask, and refer these clients to the right people, such as attorneys that focus on special needs, trusts and planning.

EBA: What are some of the questions advisers have about working with these clients?

Harmon: One is, “What do you mean that someone could become disqualified for government benefits?” When we tell them that if an individual has more than $2,000 in their name, they're no longer eligible for Social Security Disability Insurance or SSDI, they usually just gasp.

Another one is “how does Social Security Disability Insurance work?” Well, once you start taking Social Security, then you're dependent if they became disabled before age 22 with then be eligible for 50% of what you received when you filed for it and then you have to tell the government that you're to file for them as well and then when you pass they get 75%.

EBA: We're starting to see employers and benefit advisers offer a legal HMO. Is this something that can help caregivers with establishing a trust and guardianship?

Harmon: We have friends in New York who just went through all of that, because their child is at that scary age of 18, and there's stuff we have to do differently than other parents. As long as this legal HMO covers a good portion of it [it could help]. Using it should be like using a physicians directory that indicates whether a doctor is a cardiologist or a general practitioner. There'll be some general practitioner attorneys, but it would be nice if the description says “specializes in special needs” or some other type of legal expertise. Then you would know that attorney offers the type of counseling that you need. If they're creating that type of network that would be great.

EBA: What are you hearing from employers?

Harmon: When we bring these services up to employers, they’re never indifferent. The response is always positive, and they ask to know more. It's almost as though they didn't even know they existed and that this was something they could provide.

EBA: Why has this has this group been largely overlooked?

Harmon: It may be due to a lack of advocacy on their behalf. As we discussed, it's very complex just to navigate these waters and find the right person to guide you. Personally as well as professionally, I want to change that.

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