Before #b#Marty Shenkman#/b#’s wife was diagnosed with multiple sclerosis six years ago he was as clueless as most financial advisors and estate planners are about how best to serve the 120 million Americans living with some form of chronic illness. “I was really taken aback that there was nothing in the professional literature on estate planning about what I should do to help her,” says Shenkman. “My personal mission is to correct that flaw.”

In addition to his law practice Shenkman has been busy with his volunteer job — educating via books, articles, and lectures to financial planners, CPAs, attorneys, and insurance consultants through the organization he created, RV4TheCause.

Perhaps one reason that most people are unaware of the extent of chronic illness is that for about 96 percent of those living with chronic illnesses, their symptoms are largely invisible.

Take his wife. On the surface, she looks fine, but she is limited in numerous ways, Shenkman says. “Neurologic fatigue is probably one of her most disabling symptoms. It’s very hard for people not affected by multiple sclerosis to understand that it can be really disabling — it’s exponentially different than normal fatigue.”

As her disease has progressed airplane travel has become nearly impossible: her medicine must be refrigerated; it’s difficult taking syringes or liquids through security; if she has not eaten often enough, she gets physically sick; and because of the fatigue, which Shenkman describes as being “like drowning in quicksand,” any delay is tortuous.

But the couple came up with a great solution. They bought an RV that would hold everything they needed. “This wild and crazy idea came up that we would set up a charity and while we travel do programs,” he says. And he has already reached thousands. (See rv4thecause.org for more information.)

Shenkman will speak on “Estate and Financial Planning for Loved Ones Living With A Chronic Illness,” a talk sponsored by Traust Sollus Wealth Management (103 Carnegie Center) on Thursday, March 24, at noon at TPC Jasna Polana on Province Line Road. To RSVP for this free event, contact Gretchen Craig at 609-779-6700 or gcraig@tswealth.com.

One key point that Shenkman did not understand until he had done massive research about chronic illness is that every disease is different and every person’s experience with their disease is unique.

Instead of offering general tips on how planners should respond to clients with chronic illnesses, Shenkman offers only examples of the financial changes he has made to protect his wife in the wake of her illness:

#b#Revocable living trust#/b#. Shenkman set up this trust with an institution as a co-trustee so that his wife would have the professionalism, independence, and objectivity of a professional trustee to protect her if something were to happen to Shenkman himself. “A revocable living trust is a contractual arrangement you create to manage assets while you’re alive, and it can handle the transfer of your assets when you die,” he says. “It’s a very powerful tool for managing assets when you are alive, especially if have health limitations.”

This could also work well for someone with mental health issues like bipolar disorder. Take for example a man who, during manic episodes, has been known to start giving away money on the corner. By setting up a revocable institutional trust to manage his money, but at the same time providing him with an account of, say, $2,500 where he has debit, credit, and check-writing privileges, can protect him and his family without disempowering him. “This individual can go into a store and spend money,” says Shenkman. “If he has a lapse and a problem arises, the financial damage that he can do is limited.”

#b#Term life insurance#/b#. Shenkman re-evaluated his wife’s insurance policy and opted to convert a term policy to permanent policy, because her chronic illness would likely have prevented her from qualifying for more insurance at reasonable rates. Although many people buy term insurance to cover 10 to 20 years (because it is cheaper), many term policies have a provision that allows the holder to switch to a permanent policy. “We locked in an insurance benefit that we never would have been able to replace,” Shenkman says. “This is something that is obvious, but with no articles or checklists to guide professionals, how do you know that you’re not missing something?”

#b#Investment planning#/b#. Shenkman had to re-evaluate his investment strategy based on the changed circumstances the couple now faced since his wife could no longer work. Although many advisors might suggest a conservative, short-term strategy with relatively liquid investments, Shenkman suggests that more often the opposite is true. “The reality for a lot of people is that they may want to invest more aggressively because they need to get the portfolio to a larger size in a shorter duration to fund retirement.”

Shenkman has had many helpers along the way. One is Lorman Education Services, for whom Shenkman has been lecturing professionally for more than 15 years. The company has offered to provide continuing education credits at no charge for Shenkman’s educational programs.

Another is Guy McPhail, president of Traust Sollus Wealth Management and a lead wealth advisor at the firm. The firm has served as a local sponsor

McPhail was attending a tax seminar in Manhattan that focused primarily on technical issues when Shenkman, one of the speakers, offered him a new vantage point for advising clients with a chronic illness. “Marty got up and talked about the human perspective in estate planning,” says McPhail.

As a wealth advisor, McPhail is on top of the financial, legal, and insurance aspects of investment planning, but has much more to learn about chronic illness.

“What we are missing a lot of times is the human perspective and it’s such a crucial element,” says McPhail. Understanding how important Shenkman’s mission could be for himself, his staff, and his clients, he offered to sponsor Shenkman in a Princeton-area lecture.

The benefit to sponsors like McPhail extends beyond the lecture itself. First of all, Shenkman creates a webpage for each seminar, where he uploads a podcast of his talk. McPhail and his staff will be able to sit down and watch this video together with a client who has a disability or health issue, and together they can brainstorm.

Shenkman is building resources about different illnesses on rv4thecause.org. “If a guy has a client with Parkinson’s and Alzheimer’s, how much time can his firm spend in learning about the disease?” Shenkman asks. “But if they go to the website and find an article they can read in hour, then they can do whatever they can to help the client.” The mission of his organization is to build a framework whereby it is easy for planners to get and use this kind of information.

Furthermore, if one of his sponsors needs information regarding a particular client, Shenkman will do his best to find it and develop an online resource.

Shenkman works with several charities with missions related to his: the National Multiple Sclerosis Society; the Michael J. Fox Foundation for Parkinson’s Research; the Chronic Obstructive Pulmonary Disease Foundation; and the Association of Hole in the Wall Camps, which create one-week summer camps for children with significant health issues.

“It can be life changing not only for kids but often for their families,” says Shenkman. One reason he supports this organization is to communicate that chronic disease affects a much wider range of the population than the elderly.

Sixty percent of chronic illness is diagnosed between the ages of 18 and 64, and 36 percent between ages 65 and 74. Every year more children are diagnosed with multiple sclerosis.

Shenkman received his bachelor’s in economics and finance from Penn in 1977, an MBA in economics and finance from the University of Michigan in 1981, and a CPA designation and law degree from Fordham in 1985. He started his law firm in 1989.

Elaborating on the question of why awareness of the extent of chronic illness is so low, Shenkman observes, “Culturally in this society we don’t really face these issues. When I ask a very sophisticated accountant what percentage of your client base has significant chronic illness, I will get ‘2 percent’ as an answer. The first thing that will help clients is an increased awareness of how common this is.”

“Our culture and society are attuned to look for someone in a wheelchair or on crutches, but those are typically acute problems,” says Shenkman. We know how to deal with acute medical problems — we send someone a get well card. But if a person suffers from a chronic illness, they don’t get well; they get worse. “Culturally, Hallmark has missed the point,” he concludes.

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