Finances, Family and Special Needs Planning

Think beyond the will.

I have known Betty Lehman for many years. Each time I see her, she provokes me–in a right way. I take pride in how I have helped Mikelle become financially secure as I have dug through the avalanche of paperwork and programs finding the best nuggets offering Mikelle a prosperous future.

Every time I meet with Betty, she gives me more to ponder, to research helping me to fill in the holes in our long-term special needs financial planning efforts.

There is some heavy lifting required to manage the long-term financial needs of our special needs children. It can feel overwhelming and even off-putting, but Betty’s advice is essential to follow. Your son or daughter’s future depends on it, and so does yours!

How We Live

By Betty Lehman

In his usual taciturn tone, my late beau, Senator Ken Gordon, inquired, “Parents of children with disabilities come to your office to talk to you about disability and death?”

“Only responsible parents,” I responded.

To clarify my reaction, I do know that people who do not want to discuss end of life may be vastly responsible in countless capacities. From my more narrow perspective as a Disability Advisor, I find many highly conscientious people may also be reluctant to discuss a possibility of their disability and the verity of mortality. In fact, currently, 80% of Americans do not put their personal affairs in order before they die.

This “general public” fact concerns me, especially because there are unnecessary costs associated with lack of planning as well as likely unhappy outcomes for some family members. However, my professional interest as a Disability Advisor is possible undesirable outcomes for vulnerable children and adult children with disabilities if parents and other family members don’t plan for their potential risks and the inevitable. Lack of planning may result in unnecessary chaos, fright and turmoil for those children when something bad eventually happens. Have sufficient funds been secured for their future quality of life needs? Have they and others who have to step up for them been prepared for abrupt and profound change?

Parents who provide or have provided caregiving have an encyclopedia of information about their child’s needs in their heads. That data can be crucial to the ongoing well-being of their child or children as well as prevent confusion and disorder if they need to pass the reins unexpectedly. A Letter of Intent documents captures this and other essential knowledge utilizing one of the templates I have improved for caregiving information and other vital purposes.

And even though the beneficial effects of planning may seem obvious, and even though other family members, decision-makers, and providers may beg parents to plan for the time when others need to step into their shoes, some parents feel paralyzed about executing their planning. Even though a parent may say, “Yes, yes, I need to do my planning,” they also have dozens of reasons why they cannot get intentional with their time to do this work.

One reason may be it is overwhelming to consider and address all the possibilities and outcomes. Or, just getting through the day may be the exclusive focus of many parents. “Yes, yes, it’s on my to-do list, and I know I need to get this done, and I will do my planning after I get past my other priorities!”

As a parent of a child with disabilities, I know these are not merely excuses. However, I too often hear, “I can never die,” or, “I have to live one day longer than my child.” It is my interpretation those expressions are stated to stop any further discussion on the subject of planning for the future.

Not being intentional with time to plan is one barrier and another may be an aversion to talking about long-term care or death. Contemplating the end of life is essential. I assume most people prefer to imagine death with dignity – that is my personal preference. And perhaps it is easier in America today to believe a graceful departure is possible because the end of life in the U.S. has become so sanitized. Much of end of life for Americans occurs in hospitals or nursing homes. Sickness and death have become less visible, and thus we can give thought to “out of sight, out of mind” beliefs and mythologies about our passing away. I would like to have excellent physical and mental health until an advanced age and then pass away peacefully while I am sleeping. Unfortunately, that happens to only a small percentage of people. I wish I were wrong about this fact.

In my vacation travels to small Colorado mountain communities, from time to time I take the opportunity to visit cemeteries with tombstones from the early 1800’s. Family monuments indicate both wars and epidemics. Back then, from what I have read, conversations about death were more conventional than it seems to me they are today. Thus, Ken’s incredulity about people’s willingness to talk about demise is understandable.

However, for those who do worry about what will happen to their vulnerable children if something happens to them, for those who seek the peace of mind about disability and death, as I do, I believe the dignity and outcomes we would like to achieve are in how we live, not how we die.

One support I am privileged to provide to families is to help them identify the principles and values which will form the environment and care they want for their child. The Letter of Intent template I provide and the coaching I offer creates the documentation needed to assure their wishes can and will occur. I feel when people have the opportunity to express in writing their ethics and beliefs, their humanity, kindness, vitality and compassion, and the many positive events that have shaped their lives, it may be easier to have a more candid end of life and disability discussion when the perception is that this part of their life’s philosophy.

The Letter of Intent is all about life, love, and protection. It’s an expression of the principles and values we taught our children so that others can know who they are, not just how to support their skills of daily living. It’s our gift to our children to ensure that even though they will miss us, they will still have a quality, fortunate life. It’s an expression of life, and it is our legacy contribution to those we love.