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What, exactly, is the work I do with clients?

“Could you clarify what it is, exactly, that you do?” Several prospective clients have asked me that recently. It is a welcome question, because what I do is not one-size-fits-all, and it does not have neatly proscribed boundaries. From a professional standpoint, I have my Certified Financial Planner™ designation. This means that like any competent CFP, I can estimate how much money you need to retire, what it will cost to send your children to college, whether you have sufficient insurance coverage, and whether your financial assets are “appropriately” invested, based on your age and appetite for risk. I can help you pare down your future income tax burdens and make sure you have something to leave to the next generation and create a legacy as well.

But making these kinds of recommendations and providing the numbers and graphs and charts to back them up is only the tip of the iceberg. I mean that literally. Those YouTube factoid videos, to which my kids are addicted confirm, not only that somewhere between 87-90% of the typical iceberg is hidden below the water’s surface but also that 1) it is impossible to tell the shape of the hidden portion from viewing the top, 2) that icebergs float even to the limited extent they do because they are made of fresh water which is less dense than the sea in which they are moving, and 3) that they float because they are not solid ice, but they also contain many tiny pockets of air. In other words, icebergs come in unique shapes and sizes and there is a lot more to an iceberg than meets the eye. So, it is with the work I do.

Ninety-five percent of my clients are either a person with a disability or are family members of a person with a disability. The largest part of the below-the-surface work that I do with a client family involves helping the family member with a disability envision the kind of life s/he wants to have. As with an actual iceberg, the “unseen” base of the life plan is unique for each person. For example, does the person with a disability want to own her/his own condo or home? Do they want to live by themselves or with housemates or with a romantic partner? In a city, suburb, or small town? Who are the friends, family, and community members to whom they want to stay connected? Do they have special considerations, such as the need for a home that is accessible, that features universal design or allows for pets? Does the person work or want to work? Will the person be driving or use public transportation or rideshares, or do they require specialized transportation? Do they need to have ready access to certain specialists or other professionals? What will they want to do to keep physically healthy, to have fun, or to sustain their emotional and spiritual lives? (photo by Annie Spratt via Unsplash).

Figuring this out takes time and a lot of conversation. Some clients have been thinking about this since they or their family member first received a diagnosis. Others have been so busy with daily life that they have not had much time to think about it at all. And sometimes, there are differing views within one client family. The person with a disability, whose voice must carry the most weight, has one view, while her/his parents, grandparents and siblings have different views. Sometimes, the various family members have not shared their views with each other.

Once we have a clear vision of the future, we need to consider the level of supports required to make that future a reality. Each iceberg has a unique amount and configuration of air pockets. Each person requires a unique amount and configuration of supports. Does the person require medical or nursing care? Do they require a significant level of personal care for activities of daily living, or are they very independent? Will they require less support in the future because they are developing their ability for self-care, or will they require more support because their disabling conditions are expected to worsen? Do they require support at their workplace or in their recreational activities as well as at home? Are there or will there be natural supports in any of these situations, or will the person require all the support to be paid and professional? Are family members and friends aware of the level and breadth of supports they are providing gratis and on an on-call basis? Usually, they are not and when we look, this amounts to a lot. How will those built-in support services be replaced when Mom, Dad, siblings, and neighbors age or move and are not to provide them? When planning for a person with a disability who is still in school, how many services that the person will need in adulthood are currently provided by the school, but will not be there anymore after the person ages out at 22 years old?

The next step is to consider the kinds of supports that are available in the person’s state of residence and how the person gains access to those. In almost all US states, support services for adults with disabilities are funded through what are called Medicaid waivers. In a nutshell, Medicaid waivers are vehicles through which Medicaid dollars can be used to provide care in a non-nursing home setting for people who, without such services, would end up in a nursing home or similar institution but who, with the services, can live a full life, integrated into the general community. Each state’s waivers are organized differently. Some have only one broad waiver that is highly customizable. Others have multiple waivers, and each is limited to people in particular circumstances. Most have financial as well as medical and functional criteria. For example, my home state of Illinois has three waivers for children and four waivers for adults and the criteria for each are different.

It is only when we have worked out all of the above steps that we can actually run financial calculations. We cost out all the components that the person will need to live her/his desired life. We consider all the typical household expenses, such as a mortgage or rent (tempered for any rare low-income housing subsidy that may be available), property taxes (tempered by any tax breaks that might apply), utilities, food, indoor and outdoor maintenance, and insurance. We look at the cost of social, spiritual, and recreational activities the person enjoys, and the transportation costs of getting them to and from these as well as to and from medical appointments and work. We look at the cost of the supports the person will need to fully enjoy her/his life with as much independence as possible. We then look at how the person will pay for all of this. If s/he has a job, work income feeds into the plan until retirement. If s/he qualifies for Social Security, we factor that in. We translate the waivers that the person may be eligible for into the kinds and levels of services that the waivers will fund. And when those inflows do not fully meet expenses, we then look to how the family can contribute to bridge the gap.

The work that clients and I do together might be termed “life planning”. And the question the clients need to have answered the most is not so much what exactly it is that I do, but what exactly it is what their family member with a disability wants to do, not narrowly with her/his finances, but broadly, with her/his whole life. My job is to help the family go beneath the surface to understand, appreciate and tackle the whole iceberg.

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