My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Wednesday, October 7, 2009

Where There's a Will...There's a Way...

A message from Joyce: I believe I have shared Sarah's Life Planning Box before. Everything that someone else would need to take care of her is contained in this box and some of the forms that get frequently updated such as her annual SSI expenditure forms are on her green laptop. Truthfully, we did not have any intention of discussing this today, but I heard something this afternoon that has rattled me to the core.

Let's face it. Our lives are complicated. We have more on our plate than many families. There's all the various therapies, the doctors appointments, the medical history, the medications and durable medical equipment, IEP's, Medicaid, SSI, and the list goes on. I have created a separate binder for each major category.

Yet of all these binders, there is one that is most important and it is called LEGAL. Inside you will find copies of her guardianship papers, her special needs trust and our wills. Each year around her birthday I review the documents and make sure they are accurate. Every few years we pay to have our attorney review them with us. Does it cost money? Yes it does, but it is our obligation to the people who will be caring for our daughter should something happen to us.
If you watched Oprah today, you probably know what I am so upset about. You may have heard this already. I had not. I'm referring to the very tragic story of the Billings family. I was shocked to hear that the parents of nine children with special needs did not have any life insurance or valid wills. The life insurance I can try to understand. But for those parents to not have wills, puts a huge additional burden on the daughter and her husband who are now caring for the children. I'm sure they did not purposely mean for this to happen. Rarely do people want to talk about death, but we really all must have VALID WILLS, no matter how small your estate.
For those of us with a child with Down syndrome, it is so important to make sure the attorney you are working with understands Special Needs Trusts. Not just trusts, but Special Needs Trusts and Medicaid. Even if your child is years away from age eighteen, this is critical for long term benefits. The Down syndrome association in your area may have someone they can recommend or ask other families for a referral.
If you are in Northeast Ohio, I highly recommend Hickman and Lowder. Even if you are not in this area you can click on their website to read more about Special Needs Trusts.
If you have recently moved, be sure to check the laws in your current state for what makes a will valid. It seemed that Mrs. Billings did have a will but it was not properly witnessed for the laws in the state of Florida. Please, if you do not have a current, valid will, I urge you to take action TODAY!!!


Kim Rees said...

Thanks for the info Joyce! Very informative post with a lot of things that we may not think about every day.

Cathy said...

Thanks Joyce! My husband and I have been procrastinating on this, but thanks for the reminder. I even watched that episode of Oprah and still wasn't motivated. I'll be talking to my hubby tomorrow.

Anonymous said...

That is an excellent post! I love your box- so organized. We do have a will and a special needs trust. I think I will keep this train going!

jjpsmommy07 said...

I missed the episode on Oprah, but your post is a wake up reminder. We have thought about will even before Jonathon was born, but I do know how important it is to have I just havent addressed it, but will do so now.
Also I do like how you have seperate books ~ I have one huge book, but its confusing because I had called home my last trip to childrens hospital and asked Andrew(14) to find something and he couldnt. Guess I need to reorganize.

Lacey said...

thanks again Joyce. Once again you help guide us parents of young DS kids on what to do :)

Anonymous said...

So many things to say...I saw that Oprah too and it broke my heart...I NEED to get on the special needs trust thing...great idea for the binders and a post on what's in them, would you?? :)

Anonymous said...

Joyce.. you are the BEST!! Seeing your binders, so neatly organized makes me think of how I will be in 10 years. I feel like I must be organized to keep everything straight. We just recently had all of our legals documents made... wills, special needs trusts.. etc. The lawyer we worked with has a son who has DS. I couldn't agree with you more about the importance of finding an attorney who knows special needs law. Thanks for the great post!!

Perplexing Situation said...

I love your organizational skills. I need to go out & find me some binders. :-)

heather said...

Great post! All of your expertise and experience is so valued by us newbies (and not so-newbies). Gav and I have talked a lot about getting a will and special needs trust put together. Thanks for reminder of the importance of doing this.