As a parent of adult sons who live with special challenges, I am learning how difficult and time consuming it can be to plan ahead for their future. To be honest, I have been aware of this for a couple of years but it truly hit home this past week. Where has my mind been?
I had been working with a lawyer friend sporadically for about three years with the idea of transferring my responsibility of conservatorship to an agency for six of my sons. Sadly, my lawyer friend had to take early retirement due to health issues and we never completed the goal. The options aren’t that great, according to the instructions given to me, for conservators wanting to end their responsibilities. To name a couple, either the conservatee or conservator needs to die or the conservator needs to get into trouble and be removed by the court. Well, none of these three options has happened to date. Therefore, I have reached out to a new lawyer for assistance but…..
After meeting with the new lawyer for a little over an hour and trying to explain my family’s situation, more and more information was fed into my brain to the point it’s a bit overwhelming to comprehend and accept. First, I need to set up an estate plan (I know this is something most people need to do) but there are so many things to consider in my situation. How long will I be able to live in my home and continue to make the mortgage payments? Who will receive what from the estate? Where will I live after I sell the property? How will the sale of the property affect my taxes? It’s mind-boggling and I am sure you don’t wish to know. And do you have any idea what the legal fee could end up to be? This bill is for 1 ½ hr meeting and a written summary of our meeting only!
So, back to the end of conservatorship topic. I need to develop the estate plan and, before the agency I was considering would step in, I need to set up Special Needs Trusts for those sons who are conserved. And it seems like they would require me to document 50% of the estate for six sons. What about all my other sons who don’t need to be conserved? I don’t feel it is fair to commit 50% for six of them at this time. So, I continue to be conservator until I figure out another plan.
Now, the Special Needs Trust is another whole overwhelming undertaking. Are you aware there are different types of Special Needs Trusts? I was not and I do not plan to go into detail about that because I really don’t understand it yet. However, the restrictions for how much money, cash, or gifts for those receiving public benefits and what the trust can actually be used for seem absurd to me. Several months ago I spoke to someone who is young, smart, highly educated, capable, and knows several of my sons, to inquire if he would consider becoming the trustee for the Special Needs Trusts. He said he would be interested. However, I did not understand at that time what the trustee would need to do. After reading up on this, I feel guilty for even considering a friend, or even a family member, to fulfill this responsibility. The responsibilities of an appointed trustee are tremendous.
To make things more confusing in my situation – determining which of my sons should actually have a Special Needs Trust and who should be placed in a regular trust fund. Do I develop a Special Needs Trust for those who have previously had public assistance but who are not at this time receiving SSI or SSA income because they are working fulltime jobs? Due to their physical challenges, however, they may need to go back onto public assistance in the future. Or should I simply put those few under a regular trust fund? Do I have to compile a trust fund for individual sons or can I pool them all together into one fund? I’m sure I have you all confused by now but let it be known, you are not alone as I am totally confused as well.
I know all these legal things need to be taken care of and I am aware that I can’t do it alone. I had a meeting this week with a couple of people from church who plan to help me out. I am so thankful for this support. I will not give up but will continue to move forward to help plan for the future for my sons. At least one major task has been completed, Advance Health Care Directive Kit for most, all who are conserved and some who are not. So, I give myself a pat on the back for accomplishing that much.
Surely I am not alone in this challenge. Please share your stories of 
conservatorship or Special Needs Trust issues in the comments below.
