After You’ve Gone

June 4, 2009 at 9:45 pm 6 comments

My friend Janine posted a great review of a book on her blog. Go check it out. It’s okay, I’ll wait. Tap, tap, tap…

I know we need to take care of this. I freaking know, okay!? But just the thought makes me want to crawl under my bed and not come out for a year or more. The thing is, when you have a special-needs kid the very idea of leaving them behind and who will care for them is enough to paralyze you with fear.

Nobody else is going to understand your kid like you do, especially when that kid is basically non-verbal and unable to communicate in a functional way. You learn to recognize subtle clues, behaviors, gestures, that help indicate what might be going on but even then, half the time it’s a crap shoot and you’re left playing 20 questions. Does your head hurt? Does your tooth hurt? Does your tummy hurt? Does your foot hurt? Does anything hurt? Do you need to go to the bathroom? Do you want to lay down? Do you want to watch a video? Do you want to play stairball? Do you want to color? Do you, do you, do you…on and on and on…

We don’t have a lot of family and to be honest, there is nobody on either side that immediately comes to mind as ideal guardians in case of Joe’s and my death.

My mother is the only family member that knows Jake on a personal level and is familiar with his history, what’s going on in his life now, his quirks and anxieties and fetishes. And even she isn’t intimately involved, she couldn’t be. She’s never attended an IEP meeting, she couldn’t begin to tell you about the various therapies and theories and treatments surrounding autism. She travels for months at a time for work so she’s unable to be involved in the boys’ lives on a consistent basis. And she’s 60-years-old and single. I can barely do this half the time and I’m 34 and have a supportive and involved husband helping me out. What? Oh okay, 36. No? Fine, barely 40, that’s as high as I’m going! My point is, I know that she would kill herself trying but I don’t feel like it would be fair to ask that of her.

So because we don’t have any real options, I keep ignoring it and praying that it will never be an issue. That always works out, right? Right? Guys…?!

How many of y’all have all of this stuff taken care of? Wills in place, guardians selected, etc.? And especially those of you with special-needs kids, how did you go about choosing the best guardians in case of your death? And can I use them too?

Entry filed under: Jake, Jonathan. Tags: , , .

It’s Official Hold On To Yourself

6 Comments Add your own

  • 1. Hansi Brittain  |  June 5, 2009 at 1:17 am

    We have done it all, I think. Even gone to court to have Katherine decalred incapacitated and named her guardians. I can reccommend an attorny who specializes in estate planning for special needs kids. I know your case is a bit more complicated. I named my sisters starting with the one whose life philosophy most closely fits ours. For third in line we named Katherine’s godmother. Her guardian will name a successor guardian in case she outlives them. My hope is that this won’t be needed until she is in a group home. That way her guardian will of course see that she is being treated well and take her out (to baseball games : ) but won’t have her actually living with them so there will be less of a strain. I imagine eventually you will name Jon, but need coverage until he is old enough. If you name your mom, maybe you can leave some insurance for her to hire some help. Make sure to set up a special needs trust for Jake so he can qualify for benifits without the government reimbursing itself with what you have left him. This provides for extras. It is also a specialized trust and you should use an attorny who has experience with disability issues. I don’t know what else to say. Once you have done it you will feel better.

  • 2. Hansi Brittain  |  June 5, 2009 at 1:46 am

    That’s what I get for clicking submit without proof reading. Please ignore the typos.

    Judy, it is a hard thing to do but think about what will happen if you don’t. The court can name anyone, even someone you don’t know, as a guardian to the boys. Jake’s share of the estate will disqualify him for government benfits until he spends it down. Then there will be no more money for sissors, paper, new wii games, clothes etc. Any Social Security survivors benefits (which are not means tested by the way and are payable his entire life since he was disabled before adulthood) will be taken to reimburse the goverment for whatever other benefits he gets, like Medicaid, except for $30 a month. That won’t provide much in the way of extras. Shoot, it barely covers toiletries. I know that I will be damned if I will let the goverment have Tim’s 401K, our savings and insurance proceeds for which we have been paying premiums all these years, and I want to make sure there is money for Katherine to do fun things, yes like going to baseball games.

    One thing you could do for any future guardian is write down as much as you can about Jake, his quirks, favorite things, his Jakisms, etc. That would help them and maybe make you feel better.

    Like all parents, we were (and still are to a point) afraid to think about what would happen to Katherine when we are no longer here, and it was hard for us to sit down with a lawyer and financial planner, but we were even more afraid of what would happen if we didn’t. I really did feel better. I have to leave many things in God’s hands and pray every night, but I am comforted to know that we have done all we can.

    This may sound terrible to most folks. I want Katherine to live a full life and die in her sleep when she is in her 60’s before me. Yes it means I have to make it into my 90’s, but I would be able to die without worrying about her. Truly rest in peace.

  • 3. Joyce  |  June 5, 2009 at 4:09 pm

    Special needs trusts, when properly prepared by a qualified attorney who knows what he/she is doing, will provide funds for “sissors, paper, new wii games, uncovered medical and dental expenses, supplemental education, etc, etc” but must — in order to maintain the protection of benefits — EXCLUDE FOOD, CLOTHING AND SHELTER.

  • 4. Hansi Brittain  |  June 9, 2009 at 8:03 am

    Joyce, are you sure clothing is something you want to exclude? There are no government programs that provide clothing. When my father in law was in a nursing home courtesy of Medicaid, we used to buy him clothing among other extras.

    Katherine’s trust excludes shelter, food and medical care. Make sure medical is in there or he won’t get Medicaid insurance (as opposed to the DD benefits for group home, day programs, etc.)..

  • 5. Joyce  |  June 9, 2009 at 10:37 am

    Oh, I’m not wanting to exclude clothing… but when (10 years ago, though) I worked for an attorney who did this type of work, the IRS and state and federal benefits would all disregard the “protection” of the trust if those three specific items (i.e., food, clothing and shelter, or.. basic life needs) weren’t excluded! (of course, there ARE ways to work around that on the Q-T!) Joyce

  • 6. Mom  |  June 10, 2009 at 7:18 am

    I don’t guess it will make things any better to say, “everything happens for a reason” If loved fixed it all Jakey would be fine by bedtime. Remember my offer


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Trackback this post  |  Subscribe to the comments via RSS Feed

Judy Diane Acciarito's Facebook Profile


June 2009
« May   Jul »

Subscribe – receive email updates when I post (at least I think that’s how it’s going to work!)

%d bloggers like this: