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Expect the Unexpected

My family and I have started raising “backyard” chickens. We put a lot of thought into this project because the village has restrictions on free-range chickens and because (more importantly to us animal lovers), our suburban neighborhood is also home to voracious and bold raccoons, the occasional opossum, coyotes, and red-tailed hawks. So, we not only purchased a coop, but also a fenced-in, roofed-over chicken run. We figured that would

certainly keep all the predators out. We also purchased large, metal food and water containers as well as an ample supply of chicken-grower chow and bedding. We then purchased the chicks themselves and raised them inside under a heat lamp until they were larger and the outside temperature was reasonably warm. We were nervous picking them up and putting them down in their new home because they were so tiny. We constantly adjusted the heat lamp, trying to keep the temperature just right. To our delight, the chicks were getting bigger. Finally, we moved the young chickens outside, but only for the daytime, since night-time temperatures were still dipping into the low thirties in the early-spring. Four weeks into this, and we could finally relax…or so we thought. That is, until the day my son to the backdoor screaming. The young chickens were still small enough to put their heads through some of the larger spaces between the run fencing and its posts. One of them did to find more weeds that they like to eat. A hawked dove and, well, you can fill in the end of the sentence. That day, we went out and bought chicken wire with very small weave to wrap the outside of the run fence. Now, the remaining chickens are fully well-protected. (photo by William Moreland via Unsplash).

We thought we had everything covered because our run also had a cage-top, and a hawk could not swoop down in from above. We never expected a) that one of the chickens would be able to maneuver its head through a crack (or want to do so) or 2) a hawk could swoop that low to the ground and that close to a heavy metal fence. If I said a special-needs financial plan is like a chicken coop—you have to plug even the most unexpected holes—I’d sound like a Forest Gump wannabe. But if these past few months have taught us anything, it is that totally unexpected things can happen. And probably will in a plan that spans 30, 40, 50 or 60 years.

When I sit down with a family to plan the future for the family member with a disability, we first create goals. To the fullest extent possible, the person with a disability needs to take the lead on goal-setting. Then, when we set the goals, we need to consider the unexpected in both a positive and a negative way. Let’s take James, a twenty-five-year-old man with a developmental disability. James currently lives with his parents. James has just started to work part-time, and things seem to be going well. He has a job coach, but the job coach expects to phase out her services. James’ supervisor and coworkers like him, and he has mastered most of the tasks of his position. As yet, he does not use the cash register, but his supervisor and the job coach have not ruled this out in the future. James enjoys sports and participates in Special Olympics. James likes to go to movies and the “Y” with some of his friends together. They also regularly attend social club activities through the local special recreation association. James is also close to his two siblings. Based on this, James and his family propose this first round of initial goals:

  • James wants move into a condo or house with one to three of his friends.

  • James wants to continue to work and increase his hours up to 30/week.

  • James wants to continue to participate in Special Olympics, including state, regional and national competitions, when he makes it that far.

  • James wants to have a minimum of two times out with friends each week.

  • James will visit each sibling several times per year.

  • James will take at least one vacation of his choice per year.

We then build a model to determine how much money James will require each year to meet these goals. We consider how much he will be able to pay from his own income, how much Social Security and Medicaid waiver benefits will cover and how much James’ parents will need to contribute. We realize that, while James’ parents will pay the balance out of pocket while they are alive and well, they will need to fund a trust to continue this supplemental support once they are gone so that James’ siblings don’t need to assume a financial responsibility even though they will continue to provide emotional and practical support to James. We also note that James’ siblings might need to pay someone to help them help James manage once their parents are gone and they have their own adult lives to handle.

But completing this base-case scenario is only the first step, akin to assembling the chicken coop that my family purchased to provide the initial layer of weather and predator protection for our tiny flock. Now, we need to look at the variables that could undermine the plan. Suppose, for example, that James is unable to work due either to a condition of his or a condition of the larger economy. Then, the plan must function without James’s work income. Suppose that James does not get the level of Medicaid wavier funding that we expect? In these cases, the family must cover more. Suppose the rent on James’ living quarters goes up faster than we expect? Suppose James decides that he only wants to live with one housemate rather than three? Suppose James’s health changes for the worse? Suppose James needs long-term care in his elder years but the Medicaid facility is of insufficient quality? In each of these cases, we need to cover more expenses than we had anticipated.

Unexpected things need not be unpleasant. Suppose James has the opportunity to get a new and better job, but needs to pay a job coach to succeed there? Suppose the new job is farther and he needs to take an Uber rather than just walk? Suppose one or both of James’ siblings move out of state? Then, his visits to them require air tickets rather than just the Uber. Suppose James has an opportunity to go to an international Special Olympics competition or just wants to take a vacation to Hawaii instead of, say, Wisconsin Dells? Suppose James is determined to adopt and keep a pet? Suppose James finds a life partner and decides he wants to marry that person?

As novices, we could have benefited from detailed advice from an experienced backyard chicken farmer in our neighborhood. With 20/20 hindsight, we have now plugged a major whole in our husbandry plan, but only at the cost of one chicken. Take some time and experienced advice, to work through potential holes in the future plan for your family member with special needs and plug them before they come to pass.

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