Do I have the Will to go on?

January 3, 2008 Kyron No Comments

Ok, now that’s a question I have sometimes asked myself during really rough behavior days (or weeks or months) or the stretches of intractable seizures or other medical mysteries Katherine pops up with and tests my mental and emotional fortitude that’s not really where I’m going with this particular question today.

An article in Business Week (July 2007) says a survey by LegalZoom.com shows about 70% of Americans do not have a will. It goes further in saying that it’s a bad idea, particularly if you have children. I’d have to agree. Wills as defined in Wikipedia as “a document by which a person (the testator) regulates the rights of others over his or her property or family after death”. This is truly the document that you the right to dictate what they want done with their material property and any children, typically those who are minors, but as in our case as parents of special needs kids it can also outline guardianship issues. This is also the document that many parents will need to use to establish a Special Needs Trust (to be discussed in an article later in the series).

The first will I made was when Katherine was about 18 months old. At the time, I had no idea how profound her issues were. Actually, I was damned naive about the complexity of what she would need long term. My first will was pretty basic. I had no money or property to speak of, so leaving her the proceeds of my estate consisted of a small ($25,000) life insurance policy that I had through my employment. I had no idea that leaving her that kind of money flat out could have been a fatal error on so many levels, but again I was pretty naive. The will was about a page and a half and probably would have done more harm than good had it ever been utilized. To be fair, the attorney I used had no experience with special needs situations and for a typical kid, it was probably sufficient. The attorney was sure to tell me that I should review the document every couple of years to make sure that I continued to agree with the provisions and that all the information continued to be correct (I hadn’t remarried, had another child, etc.). That was actually the best advice I got from that session. icon smile Do I have the Will to go on?

So as the years passed, things changed….both in my life, her father’s life and in Katherine’s condition and prognosis. It forced me to get more educated about the realities of Katherine’s situation. I talked with people who’s opinion and expertise I knew and trusted and was given some good guidelines for outlining my objectives with this document. While I no longer have the piece of paper they were written on I can give you the general idea.

  1. Who do you want to trust to be the executor of your will? The executor is the person who carries out the duties of settling the estate – making sure your debts are paid off, your assets are distributed according to the provisions left in your will and so on.
  2. Who do you want your assets to go to?
  3. Do you have specific things you want to go to specific people or is it a percentage of total estate you want to leave.
  4. Do you need to consider passing property in ways that maximize the tax laws?
  5. Do you want/need to establish trusts for minor children or spouse?
  6. Do you need to provide financially for whoever is going to care for any minor children?
  7. Who do you want to take care of your child/children?

Yea even if you get through 1-6 with relative ease, I’m guessing that if you’re anything like me #7 was going to be a humdinger. That’s not surprising. In the LegalZoom.com survey mentioned above the number one reason people had not started or finalized a will was the inability to pick a guardian or agree about a guardian. Now try to figure out who you can ask to take on your day to day life and take in your special needs child with all that goes into that. I can understand why so many parents of special needs children have a hard time getting over the hurdle. It is imperative that they do.

I talk about asking someone because it’s my belief that the person or persons who are being named in a legal document to care for your child, let alone your special needs child should not learn of this bequeath posthumously. Naming a guardian is a serious and thoughtful process on your part – it should be on the part of whomever you name as well. While the likelihood is that you will be here to raise your child into adulthood, the reason the will exists is because that possibility you won’t be still exists, no matter how slim.

What if they say no?

There is always that possibility that the person you approach to act as your child’s guardian is going to turn you down. While that possibility does exist, don’t let it deter you from making the inquiry. If your first choice declines, be thankful that they actually care enough to tell you the truth and that your children will not be raised by someone who is not up to the task for whatever the reason.

The first person I asked to be Katherine’s guardian said no. I believe that was one of the most loving acts. It must have been a hard thing to do, too. I’d be less than honest if I said that it didn’t sting for a moment; I felt that they had rejected us. I wasn’t looking at it from the same perspective as they were. When I got over the initial sting, we talked about how and why they formed their decision and I respected the vast amount of introspection it showed. It truly showed the depth of love I knew they had for my daughter all along. It wasn’t reasoning I had thought of,but it was incredibly sound and I’ll thank them forever.

What attorney should I hire?

Now that I have a far greater understanding of Katherine’s abilities and limitations, and I’ve had the opportunity to research and fight to obtain the governmental programs she needs now and will continue to need for the rest of her life, I knew we could no longer leave our wills as rudimentary as it had been up until that point. We now know that inheritances of any sort could potentially decimate her ability to continue to receive the benefits we had fought for. Because we know that these things are going to be essential to her long term success as a member of society we decided to find an attorney who specializes in the law as it relates to individuals with disabilities.

While there are probably numerous services out there I found someone through the Academy of Special Needs Planners which is a coalition attorneys who devote all or a significant amount working with individuals with special needs and their family on planning for their future. This attorney laid out our whole estate plan including the trust that would protect the government assistance we had fought so hard to win for Katherine.

Do I have the will to go on? You bet I do. I have the will, the trust and all the other essential estate documents we’ll discuss over the next several days. If you don’t – start today.

Tomorrow - Living Wills & Healthcare Power of Attorney

(This is the first in a series of articles that The Special Parent is doing on legal documents you should make sure you have to protect your special needs child. The information contained within this series is for general informational purposes only and is strictly the opinion of the author who is not a legal practitioner. It is not intended in any way to provide or offer legal advice. To obtain legal advice, please consult with your attorney or a qualified legal representative.)

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