I've struggled a bit this week in my energy level and my ideas for posts. This would be the hard part of the 31 for 21 challenge. The rest of the year I write when I need to and when I want to so a topic isn't difficult to come up with, but it is called a challenge for a reason and the point of this month isn't just to blog, it's to blog to help spread awareness.
A few weeks ago when Tom and I attended our conference, one of the sessions we went to was on financial and legal planning for Tera. It was the second of this type of presentation we've been to and we walked out of there feeling better and more informed than the first time we went.
Last spring Gigi's offered a similar type of presentation and we were both eager to go because we knew it was something we had to do and we knew very little about it. Being exposed to all that information was very overwhelming the first time, but incredibly helpful and exactly what we were looking for. When this opportunity came up at the conference this time, we both agreed it would be a good idea to go again. We had two reasons for this; one we wanted to hear the same thing from a different person to make sure what we were told the first time was sound advice, and two, we wanted to know if there was anything else that we missed the first time.
We are both glad we went both times. We now know what we have to do, we're just bothered by the fact that we have to do it. It's difficult for anyone to plan on what will happen to their assets and their families when they are gone, but it's even more difficult when you have to plan for not only their childhood, but their adulthood as well. Because we don't know what Tera will be able to do when she's older, we have to plan for as many different scenarios as we can. But what also bothers us, is that we have to spend what will probably be a few thousand dollars just to make sure she isn't taken advantage of and that she's taken care of.
What this means for us: Tera will need a Special Needs Trust set up in her name so that any money she is given for any reason will be protected in case of our deaths and so that she will still be eligible for Medicare and government assistance if she needs it. This is because the government has stipulated that if an individual has more than $2000 in their own name, they are not eligible for government services and/or assistance.
We will also have to designate guardians to care for her, and trustees to care for her finances. We will have to make sure that we set up a will that designates that her money go into her trust, that our life insurance goes into her trust, that our 401k and 403b go into her trust, and that any monetary gifts she gets throughout her life go into her trust. There are lots of other details to this, but it's a lot of stuff that I don't remember and still am not 100% clear on.
Tom and I have already discussed the possibility of Tera living with us for the rest of her life and we have a plan. But there's every chance that she will live on her own, with a roommate, or with her husband. I suppose it's one of the joys and "challenges" of living with the unknowns of DS.