Tag Archives: future planning

Tragic, But Never Justified. The Need for Planning is All Too Real

A tragic story is being shared on social media today.  It involves yet another parent who decided to take the life of their child with special needs.  In this case, a beautiful 19-year-old young woman was murdered by her own mother. It is being reported that the mother “felt that she was the only one who could take care of” her. While, if we’re honest, many of us have felt this way at some point, it doesn’t excuse such a horrific crime.  We may not be able to prevent such events from happening, but for those of us who wish that we could do something, I suggest we make more of an effort to help parents get the resources they need to plan for the future.

Continue reading Tragic, But Never Justified. The Need for Planning is All Too Real

The joys of guardianship paperwork

Originally posted by Mardra of Grown Ups & Downs 1/15/2014

Yup folks, there it is, the 18 pages

I have to complete within the next week.
Sure, “the state” mailed them to me postmarked Dec 12th, but you see, to get the full enjoyment from handling this paperwork, I find it best to procrastinate until the last  possible moment and complete it in a panic, instead. Sigh. 

For starters, every state is different. And as I understand it, perhaps even the districts within each state may have slightly different fingers around our…

It’s one of those things where, sure, I want someone to keep a close eye on anyone handling Marcus’ affairs. Except me – duh. Because clearly 
I can be trusted, so what’s the problem?

Are you catching any of this? Should I start at the beginning?


Quinn and I are Marcus’ legal guardians. We made this
  decision to prevent, heaven forbid, “the state” ever making the decision to appoint its own a guardian instead. Ward of the State does not have a good ring  to it.  
Nebraska keeps a very tight leash on folks who are  guardians, particularly regarding finances. The most time consuming portion of the yearly required paper trail is completing the detailed, to-the-penny, account of Marcus’ incoming and outgoing monies. Now, until Sept of this year
Marcus had a part-time job. In addition to that, he gets a small stipend from SSI, enough to almost cover the cost
of his gym membership and music therapy, almost. So the good news is, the math  isn’t hard – there’s not much to divvy up. 
It’s mostly just annoying. Marcus clearly does not earn
or bring into our household enough money for anyone to run away with, even just for a good vacation. It’s obvious room, board, food and Broadway shows all come out of the general Sikora till. Yet I not only have to send accounting of every penny but all of his bank statements plus notarized documentation from his bank stating the information I am supplying is real.

All this so that I can keep the privilege of caring for my own son. 

Which makes me extra sad. Because I know the reason for
this is there are bad folks out there, even with their own children, and that sucks. 

The other thing is, Quinn and I both get a little paranoid when it comes to paperwork. We don’t love it. And so we think if we dot an i wrong, well, that’s it! Someone
swoops in and takes Marcus away. Our rational brains know that’s silly, but it doesn’t make the formal devil on our shoulder any easier to bear. 

Last year was the first year I had to do the money part
of this packet of paperwork because it was Marcus’ first year of income.  I did it wrong and received a summons.

SO, as is the custom, I then called an attorney who sat
with me and we went over every line to find where I went wrong. Plus he called the courthouse to be sure. He took my new and improved papers to the judge, and all was well.   

Hopefully I get it right the first time this year. 
I better get to work. 

More Legal Issues – Letter of Intent

Since this month’s topic is legal issues, I wanted to start looking at what I’ve heard experts say is the most important “first step” in planning for the future – the Letter of Intent (LOI).

From what I’ve read (I’m no lawyer) the LOI is NOT a legally binding document, but it is a way for parents to let their wishes be known.  It’s also a tool to help other caregivers understand your loved one’s habits and routines.  

It’s important to create – and update.

It’s a Daunting Task

I’m guilty of procrastinating on this.  I haven’t wanted to think about a time when Josh and I are separated.  Most of us don’t.  I am starting, reluctantly, to admit to myself that planning for the future is something I owe my son.   So, I’ll share with you what I’m learning, the resources I find helpful, and hopefully it will inspire me to get this done!

Starting Off Easy

When a task seems overwhelming, sometimes it’s easier to start off small.   I found an article that helps me do just that.  It suggests thinking about, and writing down, what someone would need to care for your son/daughter if you went away for a weekend.  

“What would they need to know to maneuver 48 hours of caregiving?”

That sounds do-able….   The full article (below) has more great ideas and a check list.

The Next Step

After you get the beginning done, you may want to put it into some kind of legal format.  I found another resource that has more of a “legal document” look to it, and more information on what to include.
Found at Bridges4Kids

Include Everyone

If you have other children who might be taking on a caregiving role, it’s important to involve them in the planning.  Since Josh is my one and only- I’ll defer to the resident sibling on “The Road” – Marianne Marts.   You can visit her at Joey’s Up with Downs for more information on the sib journey.
This quote comes from a study that was done online.  It found that “many siblings yearn for greater involvement in the lives of their siblings with disabilities, but need more information, networking opportunities and supports.”

Get Started

This is not going to be easy.   I’m going to try.   Have you writing an LOI?  Have any good advice that you’d be willing to share?  Have you procrastinated too?  Let’s work together and share experiences!