And When I Am Gone

ONCE UPON A TIME ... 

I was a boy scout.  

And while this was nearly 50 years ago, I will never forget the motto found in the official scout handbook "Be Prepared".  

While my scouting merit badges and medals were stored away long ago, I have lived my life by this motto.  I have tried to anticipate problems that might arise, and then prepare for it.  I admit that sometimes this has become an obsession.  I have to constantly remind myself that one can't prepare for every possible situation.  But taking this view of life has paid benefits when faced with the challenges of parenting a special needs child.

When my daughter Melissa was diagnosed with a rare metabolic disorder, the medical community was just learning how to best manage the condition.  Following her neurological trauma at four days of age, the doctors were unsure about the long-term impact.  They knew there was brain damage, but had no idea to what extent.  Would she ever walk?  Or talk?  Or be able to care for herself?  At that time, only God knew the answer to these questions.  

Over the past 20+ years, we have discovered that managing Melissa's health and her development required a lot of advance planning.  We always had "Plan B" when we traveled, because we could not count on the airlines to deliver us to our destination on time.  We obtained a "treatment letter" from her physician and a Medic Alert bracelet that would provide guidance for emergency room personnel in the event that she became ill when we were away from home.  We tracked her medications diligently.  And we became advocates for her education and special therapies.  We credit this advance planning with her ability to "beat the odds".  Today she is one of the oldest (longest surviving) people with her specific metabolic disorder.

When Melissa was little, it dawned on me that no matter how prepared I might be to help her, the day would come when I would no longer be there.  That day might be long into the future; or it might be on the drive home from work ... the result of some unexpected tragic event.

Had I prepared for Melissa's continued care if I was gone?  The answer was no.  

Have you asked yourself this question?

You might answer -- I have other children and they will take care of my special needs child.

If this is your response, then I suggest you might want to re-think your plan.  Your other children have their own life.  Do you really want to put this responsibility on them?  As you have discovered, managing someone with special needs is life-changing.   And that care is expensive.

Your response to this might be -- I have life insurance and my child can use that when I die.

Maybe so, but there are other things that you must consider beyond money.  Disabled adults require special care.  They may need a guardian to help them make important decisions.  They may need someone to help them with daily living skills and medications.  These services are offered by public assistance, but only to those who "qualify". 

Disabled individuals qualify for certain public benefits that are designed to support their living needs and their medical needs. Programs such as Supplemental Security Income (SSI) and Medicaid offer a minimum level of support and to qualify, the individual must have virtually no assets.  So if you set up a savings account for them to use when you are gone, or if you leave them a house to live in, those assets may well disqualify them for the public assistance services they will need.

Our solution was the creation of a "supplemental needs" trust. 

A trust is a legal "entity" that is formed to own assets such as cash, insurance policies, or in some cases real estate.  Supplemental or special needs trusts are unique in that they are created expressly for the purpose of providing resources for the beneficiary (your child) based on some set of circumstances (such as if you die). And by law, the assets held in these trusts are excluded from the beneficiary's assets so that they can qualify for public services. 

Special needs trusts are complex and should be designed by a qualified attorney. 

We established a supplemental needs trust for Melissa long ago.  But then the question became, how to "fund it".  The solution came from a friend who is a broker and also the father of a special needs child.  Our approach was to have the trust purchase a second-to-die life insurance policy on both Kathy and me that funds the trust when neither of us are there to support her  We found the policy very affordable.  We made the maximum annual contributions to the trust each year (avoiding the gift tax) until the value in the policy ensured that the premiums would be paid for the rest of our lives.  That being done, we no longer have to worry about where the money to support Melissa will come from when we are gone.  We are now PREPARED.

In 2004, the Minneapolis St. Paul Business Journal wrote an article about my broker/friend's planning strategy for parents with special needs children.  Here is a link to the article. 

There are many other considerations if you are planning for your special needs child's future.  This is just one of them.  An updated Last Will and Testament for you and your spouse is also a good idea so that you can direct the care of your child after your passing.  Planning for legal guardianship is also a good idea so that when your child reaches the age of majority (18) you can continue to provide oversight and guidance.   

Thinking about these things is never easy.  But once they are in place, you can rest easier knowing that your loved one who survives you will be well cared for -- just like they would be if you were there.

PEACE