One of my clients is an adult with special needs. He is the beneficiary of a 60 year old trust created to provide for his care. Thanks to some very farsighted parents he has been able to grow older in a stable, safe, familiar and secure environment.
There is a great deal of talk about the graying of the Baby Boomers. Less is said or written about their roles as providers of care for their children with special needs. Part of the mainstreaming of these individuals has been their being able to live at home. They and their parents are growing older together. The love that has provided a lifetime of support can and often needs to reach into the distant future. That calls for a very special kind of planning.
Vermont Elder Law Attorney, Glenn Jarrett, explained to me there is more to consider than just Special Needs Trusts and Medicaid Planning. Trusts and Planning can ensure there are adequate funds and appropriate medical resources. “Beyond the law is the person and their everyday needs and joys.” Jarrett referred to a Letter of Intent to provide the necessary details for continuity of support, should the parent not be available.
The Letter of Intent covers the big things like medicines, where they are and how they are given, food preferences and allergies, doctors’ numbers, and the location of important papers. An alternative care provider must be identified.
Equally critical are things like lists of what frightens or reassures a person, how does he like to be touched, what reassures her when stressed? If there are pets, what interaction is most successful? Which activities occur when and does the order matter?
Just thinking out the many and varied aspects of care can be exhausting. “There is so much to do each day, thinking 50 years ahead can be beyond comprehension,” Jarrett explained, “but after a lifetime of care, who is better placed to provide for the best in the future?”
Contemplating the day we won’t be around can be hard for any of us. Yet the sooner and more completely we make appropriate arrangements, the easier it is for those we leave behind. The more we love someone, the more they rely upon us, the farther into the future we must reach with our caring.
Those who do the most, most need to know all will be done well. After all, Aging in Place doesn’t happen by accident.