Special Needs Trusts

Last week Marcus took what I consider to be a big step in our financial planning. Among other things, we set up a special needs trust for Samantha. Two years ago a friend, and financial planner, suggest that we do that for Samantha. At that time, he was working with a family who had a special needs daughter. When the parents died, the daughter received some inheritance money, thus disqualifying her from the benefits she was currently receiving. He said it became rather messy to work out. I kept that information in the back of my mind...but recently it's been inching its way up to the forefront of my mind. I've felt this nagging feeling to look into special needs trusts...and ultimately, we set one up. I can't tell you the relief I felt after doing this. While we were with the attorney, I felt a load come off my shoulders. I feel like it was worth every penny spent for that attorney (who happened to give us an incredibly deal), so we could feel that peace and security for Samantha's future.



So, what is a Special Needs Trust? Money set aside for your special needs son or daughter.

Why is it important to set one up, or at least investigate it? In the event of your "untimely demise" (that's how our attorney put it...yikes!), this money would be set aside for our child. If that money exceeds the amount allowed in order to qualify for SSI, Medicaid, etc...it doesn't matter. It's still protected and isn't used against your child in obtaining those services. However, without the Special Needs Trust, if money is inherited by your child, that becomes a part of his/her assets and can, and usually, disqualifies him/her from receiving other benefits -- such as the already mentioned SSI, Medicaid...but also food assistance, specialized housing situations, etc. Those benefits that they may already receive may be cut off if that money isn't protected by a special needs trust.

Why is it good to set up a Special Needs Trust early? Good question. Because, I was planning on doing it later...when Samantha was older and when we were actually getting a real income (doesn't that sound pleasant?!). Setting up a Special Needs Trust early is smart for a couple reasons (that I can remember anyway). One: You never know what will happen tomorrow. As much as we like to think we are invincible, if being a special needs parent has taught me one thing, it's that life doesn't turn out like you plan. So, you plan for the unplanned...er...well, you get what I'm saying. Two: The money set aside in a special needs trust doesn't count against YOU or your other children either. For instance, say you have child #2 who wants to apply for financial aid for college. If you have $50,000 sitting in a separate account that you have set aside for child #1's care, that may be considered money that the parents have and can disqualify child #2 from getting assistance. HOWEVER, if you have a Special Needs Trust set up for child #1, even if you have $5,000,000 in it, when child #2 applies for financial aid, he'll still qualify (well, possibly if the other criterion fit). Say YOU are going through a rough financial spell. No work. No money coming in. You receive food assistance for a period of time. The money in the Special Needs Trust is NOT counted as personal assets. That money is protected. You still have to declare you have it (gov't needs to know all that stuff), but it's not looked at as personal assets -- because really, it's not. It's for your child.

What can the money be used for? Pretty much anything that isn't already be taken care of by other benefits. So, for Sammy, we're using the money from her trust for therapies, perhaps orthotics if her insurance denies them...transportation expenses to Now I Can in September...Based on Samantha's situation right now, we could use her trust money for pretty much anything it seems. But we've reserved it as a place to hold for those "special" expenses. And hopefully, over time, it will grow. As we save for each child each year, we'll put a little bit in her trust. And as she receives gift money for birthdays or Christmas -- if there isn't anything that I feel like she needs right then, I'll put it in her trust until I remember that super awesome sensory toy that I think she'll love.

So, the money is accessible? Yes, it would be pretty pointless if it wasn't. The money that is put into the trust is accessible all the time. It's not held for your child until you die. The money is there to be used. You can freely add to it and take from it. Make sure, however, that you keep receipts. At anytime, you can be audited. So, keep track of things. But you don't need to be crazy about it. Your Special Needs Trust will be under a different account. If you have a debit card from the account and pay everything for your child that you plan on the trust money paying for, you'll have bank statements that have it all documented I assume. It may take some simple organization in the beginning, but unless you are planning on purchasing everything for your child with the trust money, it's pretty easy stuff.

What happens if I outlive my child? (sigh) Who wants to think about this? But, it's a reality, right? And something that we need to know in the event that this happens. In terms of your money, you choose where they money would go. Most parents choose to have the money go back into their own account in the event of the above mentioned question. However, you can put in the trust terms and conditions that the money is to go to a charity, divided evenly among siblings, etc. It's up to you. Now, in terms of your heart, I'm not sure what happens. And I dread even the thought of it.

Like I said, our experience setting it up was easy, fast, and made me feel secure. Nice. Run out and set up a Special Needs Trust? Maybe if it's on your mind already. If not, definitely consider it. Do your research. Ask other special needs parents what they've done. The consensus from all financial planners I know (and I know a surprising amount) all say it's one of those "definitely do" items when it comes to financial security in the future for your child/children. Even if you only start with $100 in the trust, you're beginning the process of setting up security for when you are gone.

Preparing for a Hospital Stay

I really liked this post at Hopeful Parents and wanted to share the resources listed there. Of course we hope our children never have to be in the hospital, but it's best to prepare, just in case....



Resources:

National Family Caregivers Association
“When your loved one is hospitalized” www.nfcacares.org/pdfs/WhenHospitalized.pdf

National Transition of Care Coalition-Guidelines for a Hospital Stay www.ntocc.org/portals/0/
hospital_guide.pdf

Support for Families of children with life-threatening illness
www.chailifeline.org

National Family Medical Leave Act
www.dol.gov/dol/topic/benefits-leave/fmla.htm

By failing to prepare,
you are preparing to fail.
Benjamin Franklin

In Case of Emergency

What would you do if you had a medical emergency and your special needs child or grandchild is in your care? I definitely hemmed and hawwed over writing this post. I tend to be a more quiet person
and like to keep things to myself when I get sick. I really didn’t want to announce it over the internet that I had, well, lets call it an episode. But the fact remains that an emergency can occur when you are alone with your child who is non verbal or unable to let someone else know that you are in distress? Hailey is my hero.

While I was looking forward to having a well needed quality Sunday spent with my beautiful granddaughter, things went terribly awry. We were shopping at our local B.J.s when all of a sudden I had an overwhelming feeling take over me. The first thing I thought of in the few seconds I had before I went down for the count was where can I go in the store that Hailey will be safe. I didn’t have time to explain what was happening to a store clerk nor did I have time to explain Hailey had a disability etc. I couldn’t even muster up the strength to get my phone out of my bag. I headed for the ladies room, I thought if I can get to a confined space and call 911 or my husband I can tell them exactly where I am and Hailey won’t be in the carriage or able to escape. (she doesn’t walk but she can scoot all around the floor) As I was pulling my phone from my pocketbook my girlfriend was calling in, I had enough breath in me to say I am at B.J.s very sick in the bathroom and Hailey is with me. Brenda was coming from across town and I thought it would be quicker to call my husband who was less than 10 minutes away. I needed him to get here so that he could take Hailey. Moments after that phone call, I could hear 8 woman coming and going in the stalls next to me (I tried to call for help, but my voice wouldn’t come). I couldn’t bang anything to get the attention of others, I was loosing consciousness rapidly. I am typically a very strong and healthy individual but something happened to my nervous and circulatory system that caused my blood pressure to drop critically low 70 over 50 and my heart rate and pulse plummeted also. Anyway to spare you all of the gory details, Hailey began to crawl away and escape underneath the door, I got down on the floor and said “you get back here and stay with grammy” she crawled over to me and stayed with me. I wanted to be able to touch Hailey and reassure her that grammy would be alright. Laying down immediately brought the blood back to my brain and I could feel myself coming back. That is what saved my life. Hailey stayed right with me. Finally a woman saw me on the floor in the handicap stall and said “are you alright” I said “no, I’m very sick, I have my granddaughter with me, she is non verbal and she has Cerebral Palsy, she cannot walk, I need her to stay with me until my husband comes but you need to call an ambulance ” Unfortunately the roads had been blocked because of a Parade and 45 minutes passed before my husband and best friend arrived to take Hailey. The ambulance got through but I couldn’t leave Hailey until I knew she was safe with a family member. Hailey was so brave and she stayed with me on the floor for at least an hour. I believed she saved life. If I had been at home when this occurred chances are I would never had gotten on the floor. Looking back I may have been able to do things a bit differently but when you have a medical emergency there is not much time to think.

I wrote this because I know a lot of parents are home alone with children who have disabilities, we never expect that something will happen to us. But if an emergency occurs, what precautions do you have in place to keep your child safe?

Try This Tuesday: Medical Badge

Today's post comes to us from Candace and Faith. Be sure to stop by their blog, Living With Faith, and learn more about this sweet little girl and her family.

Faith has this love affair with those little clips that nurses put their badges on. You know, the ones with zip cords that can be pulled out.
She loves to beg these off of our nurses...wherever we go. They always give it and let her play with them.

So when we went for her one month follow up, at Shriner's last week, one of her nurses had bought her this fancy one with her initial on it!
It was so cute and diva~ish
So I got to thinking that I needed to do something creative and meaningful with it.

It also got me thinking about how people see Faith and sometimes ask me about her, like she isn't there or she doesn't understand them. They often talk "over" her. I have developed a way to combat that by saying things like.."Faith tell them how old you are.." or "Tell them hello" so they have to refocus their attention and then realize that she is able to understand them, most of the time. So I decided to put my mind making Faith her own id badge. This is what I came up with....



I found these self sealing laminating tags from my favorite place on earth, BIG LOTS for a dollar. (Two to a pack)



Then I cut two pieces of scrapbook paper and a picture of her and pasted them together....



Then I used leftover scrapbooking sticker to write on the front of the card...



I hung the tag on her wheelchair right where people can see it. She actually met a young man at a local church on Sunday, thru her badge. He came up and wanted to know about her name and how she got it. He was very kind and very friendly!
SUCCESS!
Now my next goal is to teach her how to pull on it and hand it to people when she meets them!

I also use these pouches to list emergency info for her on her car seat, wheelchair and bags. I usually list phone numbers, identifying info about her, info about her conditions and medication lists.








Thank you Candace and Faith for sharing this great idea with us