As you’ve become my support group and more importantly my mentors…
I have an issue burning inside me…that I need some feedback on.
As many of you know I have a beef with my husband’s long-term disability company. Though I may be repeating myself (I apologize), I’m going to put down the details here in one place.
My husband gets SSDI and his LTD. Three years ago when we moved to GA we were told to get SSB (Social Security Benefits not Income) for my daughter and I for the purposes of raising our daughter. We knew that we had to be worried about my husband bringing in additional income but were assured (to the point of making Social Security angry) that her and my SSB are not my husband’s income and not to be considered as such.
Down swoops in the LTD who says “NO!” because of the word inclusive—any—funding coming into the home is as if my husband earned it, thus becoming his income. Additionally because of this word inclusive, my daughter and I, for the lifetime of the policy, are not allowed to work and if we do his policy immediately ends. So in the meantime his LTD check was cut in half, leaving us to live on 60% of our total household income. So the only things we pay for is home, utilities & etc., food and medication. At the same time Social Security requires that we fill out a form stating how we spend our daughter’s funds. Because we have no one advocating for us, we state it as if everything were being spent on her.
My concerns are as follows:
We might be lying on the SS form for our daughter. She and I will never be allowed to earn a living. We are going to be forced with “hands behind our backs” to live off of the government. I have family who wants to leave us finances and we can’t let them because of “inclusive.” I have “unclaimed funds” to collect on and can’t because of “inclusive.” There are community assistance programs (insurance, food, house changes) that would help us, but don’t have access to and we can’t go to Legal Aid because we “make to much.” We have no money for an attorney because we have medical bills and such that we can’t/don’t even pay.
What also scares me is what will stop the LTD when this “supposed deduction” ends in 12/2013 from not doing it again as my daughter and I will still be getting these funds. Why is our family being prohibited from any attempt at trying to provide, on any level, for ourselves? We even gave up my daughter’s and my health insurance just to bring in extra funds to help.
Who I’ve tried to contact for help:
Attorneys, politicians, legal aid, community advocacy groups, disability community advocacy groups, radio shows, and today I’ve even contacted a TV news station. The top three responses are: I’m sorry we don’t handle that. We can’t help you, talk with legal aid again. I’ve never heard of that, but we’ll call you back if we come up with something.
I’ve even had one person ask me to move to another state that is more “disability friendly for people [like us].” We have even briefly considered divorcing to get around this issue but we’ve been married 25 years and strongly believe in its institution.
Bottom line:
We are an American family with American roots and we can’t get legal representation in one of the most litigious countries in the world.
When I go to bed at night, this is one problem that I always lay on the pillow with and it is wrong! Maybe inclusive doesn’t mean “to include” but really means “to separate.” Maybe my husband and I were taught wrong and shouldn’t have gotten a long-term disability policy for a rainy day. It rains all the time here right now.
Thanks letting me vent.
The Roaring Mouse
You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 
kristin
Roaringmouse, who provides the LTD? And is it a lump sum, or does it pay medical/treatment bills? You can email me at kmasters21 @ wildblue.net if you like.
roaringmouse
Kristin…thank you! Just sent you a note.
ejourneys
Honestly, when I read something like this, the system makes me hopping mad. Better to vent than to hold it in.
On the family wanting to leave you finances — I’ve heard the term “special needs trust” bandied about. I’ve also learned that it means different things in different states, so I don’t know if something like that would be feasible.
My heart goes out to you all. The treatment you are getting is unconscionable.
roaringmouse
Until I can get someone who can tell us what we can/can’t do…we’re frozen. But thanks for the idea…I’m going to tuck it away.
The brevity of this vent is similar to that of the hurricane story. It was for this reason that my husband re-affirimed my given nickname of the Roaring Mouse.
(I wish I knew how to put the picture smilies in.)
Kathy
Roaringmouse,
When Hubby started receiving his SS disability, the kids each received a SS check. I also had to account for the moneys spent.
If your daughter is living with you, getting the basics of food clothing and shelter, Just that alone would be more than what her monthly check would be. At least it was in our case. So stating that all the funds were spent on them was indeed the truth.
roaringmouse
Kathy,
Your note is reassuring. We’ve just been rejuggling numbers now that she and I don’t have health insurance. Thanks for advising me on that. We had no education. The form just showed up one day. So we blindly guessed.
G-J
Good morning! We’re in exactly the same boat. When Steve was put on disability, his LTD kicked in. In our case, the LTD company immediately hooked us up with an attorney to assist with navigating the social security system. Our receiving social security was to the LTD’s advantage because they could reduce their payment to us by the amount we received from social security.
This year we also received the paper to complete on how our son’s money was spent. Like Kathy said, our son lives in the house where we use gas, electricity, and water, plus is insure; we drive our son places in a car that takes gas and needs maintenance; he wears clothes which he outgrows so they need to be replaced; he eats, often more than Steve and I do; plus there are the costs for being in band, scouts, cross country (and the cost of the shoes!!), and taking AP tests. I really wanted to explain that we spend more than they give us, but knew there was no point. Being the first year we completed the form, I felt like they make the “right” answer obvious. I had to call a friend to ask if I was understanding it correctly!
Our next challenge is that Steve will go on Medicare in June. Just Steve, not me or our son. COBRA will end for us at that point, so I have to shop for new insurance. Being 51, it’s a long time before I’ll go on Medicare, so this will be a large expense for many years. First I have to shop for insurance. When a friend recently asked me why I didn’t just get a job for the insurance, I thought before replying. I didn’t say, “What kind of job do you think I’d get in this economy?” but I did say, “Well, I’m not sure I can find a job that would let me take off all the time I need to take Steve to a weekly support group and medical appointments as they occur.” And then of course, there’s the offset to the social security and disability.
Maybe we can meet mid-ship later for a cup of coffee to discuss this more!
roaringmouse
Good morning! What company were you with? I’ve had lots of people ask me what would be a good company to use. I’ve also got a crazy dream of getting my own some day. ;-p
I just fill out the form so the amount goes slightly over. We really have no education on it.
You may want to look around for programs that give stipends to caregivers. I’ve heard that Medicare does it. Supposedly LTDs do it…but I didn’t want to drain my husband’s funds and even then it was only gas money. Sometimes there are county programs that would qualify you for this too.
Would love to chat at coffee time!
Thanks!
Trish
RM, Very frustrating indeed! I’m doing some research on Special Needs Trusts (I’m not an attorney but work with them and can get this type of info). I will send you & Jane links later in the week. Each state is different so I’m getting info on CA, FL and GA.
roaringmouse
Trish, Thank you. This is one topic I’ve learned that you either have to be a lawyer or have access to one. It really irks me that there are so many out there who stumble into this. The common that I’ve heard is…well there’s nothing you can do about it so you just pay. This should not be an accepted bill without good reason. But no one fights it. Maybe that makes me weird! Nothing new!
Anyway…thanks for looking into this. I’m curious to see what you find!