Have Disabled Spouse, Will Not Divorce!!

Sorry, for the strong title. But I want it to catch the attention of whoever agrees with it.

Yesterday, I met with the Congressman. To prep, I spent five days sequestered at my desk pouring through documents, practicing possible questions, researching and putting together a binder that had a three-page, 1,000-word summation of events; letters from the LTD; social security info on us, correspondence, the policy, cases and a miscellaneous notes page.

Upon arrival, I met up with our Rabbi who came both to offer support and had a professional connection with the Congressman as well. <wink!> He and I continued to practice the debate until the meeting.

Okay, Mrs. George. The Congressman will see you now.”  (Heart don’t pound on me now!)

For 45 minutes (only 30 were scheduled), we discussed back and forth all that hubby and I had gone through with this LTD issue, the resulting situations and how we could get around it. During that time, every point that came up I was able to locate supporting document in my binder. At one point the Rabbi and I even took turns finishing sentences for each other.

The Congressman….I felt sorry for him. He had started the meeting with acknowledging that my/our experience with an LTD was not one he ever expected to encounter should he ever have to use his. And I understood he got his policy for the same reason we got ours…for that rainy day we hope never comes.

At the end of the meeting here is the bottom line:

The Congressman clearly understood that I’ve never had anyone in the (possible…) 100 or so contacts I reached out to for assistance sit down and actually listen to the problem, acknowledge its immorality and see if there was a way to fix the problem. He is also going to reach out to the state insurance commissioner and see what can be gleaned.

In the meantime, as the issue is over a contract that is not regulated by a federal agency and there may be no quick fix,  we have to come up with another alternative. Here is where I need your help!

  • My husband is disabled. He has SSDI and an LTD.
  • Both myself and my daughter are healthy and get Social Security benefits (not income).
  • The LTD is claiming that “ALL” funding coming into the home is considered to be my husband’s and thus that can offset the amount he gets from LTD.
  • So my daughter and I are forbidden from bringing any funding, income, etc…into the home or we will be penalized.

Here’s another way to look at it:

Effectively immediately, now that your spouse is disabled…no more money can come into your family.

The only possible way around this (we think!) is for–on paper–my husband and I to divorce, daughter and I move out of the house and then have all the income go to the other address. (We still couldn’t stay in our own home because we don’t know if the LTD would come and videotape, document, etc…the events.) (Google it–it’s true!)

Here’s what I need from you, at the request of the Congressman I am working with:

We need any and all stories that have families with LTD’s in our situations, even if they’ve divorced or had to put their loved ones into a home unnecessarily. If you are not even sure if a story applies, send it on any way. I don’t know if anyone has ever documented this scenario, but part of the problem is that the commissioner’s office says they get this story all the time. If that’s the case, don’t they see anything wrong with this morally? Even if my husband is disabled both my daughter (when old enough) and I have the right to become working members of society. I don’t want to live off of the government. I don’t want to live in poverty because someone tells me that’s where I should live.

And (sorry Denise!!) Hell will freeze over before I divorce my husband of 26 years because the LTD doesn’t want us to progress in society!

Oh! How do I think the day went?? Change doesn’t come about unless discussion occurs. Not only was there a discussion yesterday, but the Congressman wants to see a change on my behalf: be it a correction or a law. At that moment I volunteered and told him, “Just tell me what you need and I’ll figure out a way to get it. This is a wrong situation and families across the US should not endure this. Just tell me what you need – I’m there!”

(PS. I also got a huge KUDOs from the Congressman for the binder (that I was working from) that I gave to him. He said it was the first time he’d ever seen anyone come into his office as well prepared for a concern as I was and the book was ‘beautiful’. “Keep going and don’t stop!’)

“Educate and Advocate”
“To fight for your beliefs, you must believe in your fights.
To succeed, you must get others to believe too.”
– Laura George

AKA…The Roaring Mouse!

Profile photo of Roaring Mouse

About Roaring Mouse

I am a G-d speed caregiver for a spouse who had a spinal cord injury, syringomyelia, autonomic dysreflexia, TBI x 2 (Tramatic Brain Injury), complex regional pain syndrome and two shunts.  I've been with Caregiving.com for over two years now and have actively participated in the Caregifter Essay program. As an Emergency Management Disability Liaison for a nationwide disability disaster response non-profit, I work to engage both disaster responding and the disability communities to network and collaborate on disaster planning while educating and advocate both on the importance of the topic.  In my spare time I volunteer at a local spinal cord rehab therapy center gifting both the clients and the caregivers with resources and silly jokes so they leave with a smile.

16 thoughts on “Have Disabled Spouse, Will Not Divorce!!

  1. Profile photo of ejourneysejourneys

    HUGE Kudos from me, too — for stepping forward to arrange the meeting and for all those paper trail and debate preparations. And kudos to your Rabbi. I am so glad the Congressman’s in your corner.

    I have linked to this post on my Facebook page, Twitter, Google+, and Pinterest (so far). If people have stories to share, where do they send them?

    Reply
    • Profile photo of Roaring MouseRoaring Mouse Post author

      Ejourneys,

      (blushing!) Thank you!

      My husband has explained to me about how the four software pieces work. At the same time we don’t use these for security reasons. I was thinking of maybe just using an email address, but at the same time…you got me thinking that these should be shared.

      Can you hold on to them for a day or two and let me see if I can get someone to run site on one of those four..for me?

      I’m open to ideas.

      Again, thank you and Happy Passover! Happy Easter!

      Reply
  2. kristin

    Hi RM,
    I’ve already given you my story, and I know it wasn’t much help, as the woman in question was able to get enough help from her family to be able to give up the LTD and not have to live under their draconian rules. But I want to congratulate you on your successful presentation, which you managed to squeeze out hours to prepare in spite of your caregiving and parenting responsibilities. As this is the sort of thing I spent my career doing, I know what you put into it and am really impressed. Just to get a Congressman to LISTEN to you is a marvelous achievement. I hope something comes of it that will help you NOW.

    Reply
  3. Profile photo of Roaring MouseRoaring Mouse Post author

    Kristin,

    Thank you! I’ll tell you we ate a lot of last minute meals and I gave up a lot of family time to pull this off. But if someday we benefit…like the short term was just getting someone to listen – who did….then it is all worth it.

    Can you resend that? I have lost all personal email since 3/24 and that went with it. The story; I can use because it shows the lengths to which one person worked around the situation and is also a great example of how “counterintuitive” getting the policy was. (great word! from his aide!)

    Reply
  4. Profile photo of DeniseDenise

    Good for you, RM!! I can tell that the meeting went well because you sound like you found your energy again. Sounds like you and Rabbi were a perfect team.

    I’ll also do my best to get the word out that you need stories.

    Reply
    • Profile photo of Roaring MouseRoaring Mouse Post author

      Denise,

      Thank you. I think I lost some energy because I was afraid of yet again being brushed off. I’d already contacted a 100 or so before getting to this point. It’s very scary being here and being locked in four corners. By fighting …at least I know I’m making a good faith effort to try and right a wrong…before accepting it as is.

      Thanks for trying to find the stories. Yes, even if they have already divorced or even gave up their LTD would help too! – Thank you!

      Reply
  5. Profile photo of Bette

    Hi Roaringmouse,

    Congratulations on a much deserved meeting. Not only do you take such good care of your husband, you continue to advocate for the needs of your family – and so many others will benefit as well.

    Thinking of you and hoping your week-end is a calm one.

    Reply
    • Profile photo of Roaring MouseRoaring Mouse Post author

      I am not doing anything fancy..but thank you!

      I guess I just kinda look at things that if an item affects us..it might affect someone else too. So if I’m going to advocate…I’m going to going in advocating for many. There might be another caregiver out there who needs the same things…but doesn’t haven’t the resources to advocate for their needs. The help I give to someone…may be the someone who helps us down the road.

      As to calm??? Ha! Ha! While I’m typing I’m crushing matzoh to make Kishka (a kind of stuffing) which is a favorite of my hubby’s.

      Reply
  6. G-J

    Wow! You impress me so much! You are a role model to me as well as your daughter.

    When Steve was first diagnosed, someone told me they knew a couple where the husband was diagnosed with Alzheimer’s. This person said that the wife’s regret was that she didn’t divorce her husband earlier to have earlier access to, well, benefits I guess. Frankly, I stopped listening as it became apparent this man was advising me to divorce my husband!

    I’m completely with you, Roaringmouse, and I will NEVER divorce Steve.

    We do receive social security and LTD. When I worked, we lived off Steve’s paycheck and saved mine. We inherited some money, which helped beef up the savings. Frankly, I am afraid to ask any questions of our LTD after reading what you have learned. Right now, we’re fine financially, but yes, I am concerned about the future. I have plans to live many, many more years. :)

    Reply
    • Profile photo of Roaring MouseRoaring Mouse Post author

      G-J,

      You flatter me! And I’m blushing, but thank you! Today I just sent the Congressman a thank you note and have directed him here to read some of the postings listed.

      Yes, it is scary to ask the questions. All I can suggest is find your policy and see if reading it can answer any of your questions. If not, reach out maybe to your state insurance commissioner…maybe they can answer. You shouldn’t be penalized for asking questions of your LTD, but I agree with you…you don’t want to bring unwanted attention where it might not be needed.

      Keep me posted!

      Reply
  7. Tom

    Dearest RoaringMouse,

    I am amazed ! You are amazing ! Great job on such a big meeting! Preparation makes everything happen. I hope you got some time to decompress.
    When Lisa was diagnosed with stage 4 cancer, her company denied her LTD, and we did not know enough or care enough at the time to fight it (hoping things would get better, btw this is one of the largest corporations in the world). We just saw our family income cut in half, medical bills through the roof, and eventually total financial ruin. After six years disabled, and four years of filing, we finally found a disability lawyer, and Lisa was able to start collecting a very modest yet welcome SS disability. I really never understood what the problem was. The attorney asked us if we filed all the required and requested paperwork and went through the process correctly. When we said, “yes, over and over”, he said ” doing what they tell you to do, that’s the problem”. Whatever he did, it worked.
    I received conflicting professional (paid for) tax advice on accounting for disability payments, and that bad advice then got me into trouble with the IRS. How am I supposed to know when a paid tax preparer is wrong, when a Social Security office worker is wrong, when an insurance company representative is wrong? I’m not sure how, but I am sure that our family is who must accept the consequences for every decision made wrongly by some huge bureaucracy, be it corporate or governmental.

    During all this and still today, the whole situation is so depressing that I sometimes feel unable to cope with financial matters, until they become so pressing that I have to focus on them. Since my wife’s life is dependent on my insurance, there has never been any consideration of divorce for us, and I am very glad that we have never been pressured to consider it.

    Reply
    • Profile photo of Roaring MouseRoaring Mouse Post author

      Dear Tom,

      Thank you so much for your post. I cried after reading it. Then I read it to my husband who also about cried. I will be carrying your and your wife’s story very close on this journey.

      I also understand how you address financial matters. I’m guilty of that too. Though I must admit part of it is because we simply have no funds with which to pay some of them. I can’t even offer a part time payment. At the same time we can’t afford a CPA who might help us out of this mess ….perhaps.

      I’m glad you found that you didn’t have to divorce.

      Hugs!

      Reply
  8. memster

    Dear Roaring Mouse,

    I dunno if this is any help, but you did say to send our stories whether we knew or not, so here’s ours.

    My wife has been disabled for a long time receiving SSI. After a car wreck and work accident, I was determined disabled January 2011 receiving RSDI (the type of Social Security one pays into). The Social Security Administration [SSA] started reducing my wife’s SSI based on my RSDI income. I tried everything with SSA for them NOT to reduce her benefits and the final answer I got was … I have to divorce her and move outta the house in order for her SSI to remain the maximum amount … which I, like you, refused to divorce my spouse of 28 years. I even offered to become homeless (sleeping in the car outside or down by the bridge where the other homeless hang out). SSA refused to allow me to do even this. The problem is a 50 year old law requiring the agency[s] to count incomes against SSI and other types of special assistance. The law (income amounts to consider) has not changed with the times where everything has risen in price, except the “income amounts to consider” in the laws. Since the agency[s] have to by law consider our incomes against our spouses, it would only be right by Congress to consider the “income amounts being considered” since these 50 year old laws have not changed, but everything price wise around us has. Maybe your Congressperson can help get those laws changed where the incomes being considered will be raised or even EXEMPTED to help those of us that are taking the hit and being told to divorce our spouses in order to fit into the mold of 50 year old laws that haven’t kept up with the times.

    Reply
    • Profile photo of Roaring MouseRoaring Mouse Post author

      Dear Memster,

      Welcome to the site! Thank you equally for posting your story.

      Yes, your story fits in with what I’m looking for. These are stories that shouldn’t exist. So many times I was told for my own family’s situation. “Don’t bother fighting it, this is common.” Even at the Congressman’s office I was told a version of this. .

      But that doesn’t make it right!

      For you and everyone else who has posted to this item thus far, I’ve sent the information on. I hope to collect more and by weeks end, I hope to have a note out to my own contacts. I know this won’t be corrected overnight….

      …but how dare a government representative tell you that you should divorce to fix a problem that government created!!!

      Though your story is SS only and not LTD..it is equal in nature that people are telling us (and they seem to be perfectly okay with this?!) that only one funding per home is allowed.

      GRRR…

      I’d better sign off here….(mumble…grumble…)

      Thanks and many HUGS!

      The RoaringMouse

      Reply
  9. angel

    i know this old.but i’m in this situation now.my husband is permanently disabled.i have many of my own health problems .i have no health insurance and no way will i be able to afford Obama care.30 thousand a year no money in the bank own nothing but a car. last year i only made 12 thousand.got food stamps was able to go to the clinics for my own care.we lived in awful poverty .i’m now cleaning house every day it’s back breaking work and the doctors at the clinic told on my own application for disability that i should find other work.however it’s ll i know how to do i’m 55.now my husbands ssi was cut off .i no longer qualify for the clinics,cant afford obama care .haven’t seen a demist in years have very few teeth left.waiting to hear back of when they might drop my husbands medicaid since i now earn 30,000 a year.we go hungry allot.the rich people i work for said i should divorce my husband.he has had 3 surgery’s in 3 years multiple serious health problems.i don’t want divorce my helpless husband.i guess we both go down in this process.exhausted.

    Reply
    • Profile photo of Roaring MouseRoaring Mouse Post author

      @angel

      The fact that you found this note and still wrote a note to it states the intense sweat, frustration and tears you must have shed to get to this point. People who tell you to divorce your spouse simply because of his medical concerns are really voicing what they would do if they were in your shoes. So you deserve a medal because you’ve chosen an honorable and one of a kind path. I’m honored to meet you.

      I’m going to offer a variety of ideas but they’ll be limiting because you don’t say much about what your husband is facing that has caused you to be in the position of caregiver. However you must be a good one!

      Center for Independent Living or Independent Living Center: These are in every state and can be thought of as a library for persons with disabilities in terms of finances and resources. You can find yours via http://www.ncil.org and look for the section that identifies your state.

      Your local Health & Human Services department: They always have access to a variety of community resources and contacts that lend themselves to putting you in touch with community programs that can help you.

      Get in contact with a local food pantry. Some are very well run and can put you in touch with other community services as well.

      Politicians: I know this sounds kind of odd…but they are also networkers. The fact that both you and your husband are in your late 50’s and can’t get SSI or other equivalent programs sounds odd and that should be brought to the politician’s attention.

      You may also want to meet with a financial counselor or VITA tax assistant to have them help you work with your finances since you stated you made 12K last year and 30K this year. They can help guide you through the tangled mess that many caregivers find themselves in.

      At the end of all of this..you only have to go down exhausted…if that is what you choose. But something tells me that you believe there is a “fight worth fighting for” and I am confident that you’ll succeed.

      Best of luck!

      The Roaring Mouse

      Reply

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