So, my husband has made the first of the series of appointments to undergo predictive testing. We're both pretty anxious. :-(

We're in the process of getting all of the recommended insurance in place. We already had health insurance. He also had life insurance through his work, but we recently purchased private policies on him and our son, too. We're now looking into long-term care insurance. It's expensive, but we're going to try to swing it. If it proves totally unaffordable at this time, we might have to postpone testing.

I have questions, though, about long-term disability insurance. What is the best way to obatain this? Should my husband sign up through his work? And, why not just rely on SSDI, if he becomes disabled? Will LTD insurance provide protection in ADDITION to what SSDI provides? Does getting LTD privately (or through his work) limit or affect the amount of SSDI one is eligible for?

Not sure anyone will be able to answer these questions, but any guidance would be appreciated. I'm worried about my ability support my husband and son as best as possible in the future, should my husband become disabled. I want to do the best that I can. I want to have as much protection in place before testing as possible (i.e., as much as we can afford).

You are smart to consider getting the insurance ahead of time. You can always cancel. Unfortunately we didn't think to do that. I wouldn't count on disablilty through the government...the way things are going. In my state they are cutting way back. I've never been on it, but I know several kids with autism and other problems and the parents are really worried. A lot of people who need assitance are out of luck. Even if your state is well off finacially, I have a feeling that many are cutting benefits. The new sad reality. The whole world economy is not really very healthy. I see part of it as world over-population...that's just my perception.

[en.wikipedia.org]

check that out.. i think the benefit of LTC is additional flexibility for paying for supplemental care. it also offers a better quality of care than SSDI. i think most of the benefit seems to be about staying at home with additional help, or moving into assisted living, rather than specialized medical care.

if your husband plans to purchase it through his work (thats what i do), please make SURE the plan is 'portable' meaning that he can choose to continue paying privately if he leaves his job or moves to another company, etc.

should he get a huntington's diagnosis (lets hope not), you wont be able to get this insurance again if it is lost or lapsed.

SSDI does not pay for nursing home care. It is a replacement income program (run by the government) for when someone becomes disabled and is unable to work. LTC pays a portion of nursing home care so that someone does not have to deplete his assets and rely on medicaid to pay for a NH. Some private long term disability programs deduct what you receive from SSDI in replacing your income and some don't. It depends on the type and quality of coverage that you carry. Having a private LTD policy does not effect the amount of SSDI you receive. That is based solely on your work and earnings history. Also, the cost of an LTC policy rises as one ages. It will always cost more tomorrow, and of course will be difficult to obtain if diagnosed with a disabling illness.

double post



Edited 1 time(s). Last edit at 11/27/2011 05:32PM by howard.

SSDI is a federal program not a state program so it doesn’t matter what state you live in. If you become disabled and are no longer able to work you would apply to Social Security for disability benefits which include a benefit payment and Medicare health insurance which you pay a monthly premium for. The premium is deducted from the monthly benefit.

Long Term disability Insurance is a policy that you pay monthly premiums on. In the event you become disabled and are no longer able to work, the LTDI benefits will kick in. However, you will be applying for SSDI and LTDI at the same time. LTDI will pay the benefit covering whatever SSDI does not pay. If you are earning $100,000/yr, your LTDI is planning on paying you $100,000/year if that is what you have purchased. If you are granted SSDI benefits, LTDI is only required to pay the difference of the $100,000 less the SSDI benefit. So, if in your state, the SSDI benefit is $55,000/yr the LTDI benefit will be $45,000/yr. LTDI through my employer only pays 60% of my annual salary if I become disabled so there are other aspects to the equation regarding the actual benefit. It depends on what you purchase.

You can rely on SSDI by itself but it will be substantially less than what the individual was earning prior to becoming disabled. I think (and I may be wrong) that the last few years of your federal tax return are considered when SSDI is granted.

I also agree with what noreaster said about being able to take it with if you change jobs or move on.

Here is Phil Hardt’s link from 10 years ago. It still holds up. Thanks Phil. This is great advice.

[www.hdlf.org]

Pete

Sign up for the LTD through work. The employers LTD will be offset by SSDI BUT the employers LTD is usually higher then SSDI so LTD will pay the difference. Read the policy. If its a good policy it will have a catastrophic rider that will pay even higher when/if phd needs help with activities of daily living (dressing/showering etc.) and will have attorney's that will help you get SSDI when/if the time comes.

If the premium is taken out of his check BEFORE payroll taxes, you will have to pay taxes on the benefit.
If the premium is taken out AFTER payroll taxes then benefits will be tax free.

My phd had LTD though his employer as a benefit. He signed up for an additional "income protection" policy (not knowing what it was but took it anyway). This policy is through UNUM and is convertable to LTC policy. For a few dollars more a year he also signed up for the Cost of Living (COLA), CAT rider and LTC riders. At the time he was busy at work and hated dealing with insurance matters so he told the HR girl to just sign him up for all of it. Thank god he did! The policy has been a life saver. Since the premium was paid after payroll taxes we don't have to pay taxes on this income.

Keep in mind that if your husband is disabled and is no longer employed his life insurance through the employer could end or they may have you convert it to an individual policy. If it has to be converted the premiums will be insane and it probably wont be worth keeping. Luckily for us my husbands LTD policy though work was with the same company that carried the life insurance. His LTD had a rider that pays his life insurance premiums if he is disabled without having to convert them.

I know all this seems overwhelming but just take one thing at a time and understand what it is and how it pays. I'm crossing my fingers that you wont need any of them once he gets tested!

Wow, thanks, all.

He will be looking into getting signed up for LTD insurance through his work tomorrow (Hopefully! Things have been really, really busy at work for him. But this is important, so I'm hoping it is going to be a high priority!)

Since we already have health insurance and life insurance (life insurance through his employer as well as a private company), all we'll need, after obtaining LTD through his work, will be long-term care insurance. I'm hoping the process of getting that won't be too lengthy, so that we can have it in place before the test. We're looking into a private company for that.

So nervous. Thanks for your advice and kind replies.

Sincerely,

Bluegrass

P.S. On a lighter note, my band was featured briefly on the "Today Show" on Thanksgiving Day! We played at an "Eat for Equity" (a nonprofit org) Benefit in Minneapolis, and "Today" did a feature on Eat for Equity on its Thanksgiving episode. We were shown towards the end, for about 10 seconds. Kinda neat. (I play the fiddle in a bluegrass band.)

P.P.S. To say I'm nervous was an understatement. Any encouraging words regarding potential treatments/cures are really welcome. I'm in dire need of some encouragement/good news/cheering up.

Best of luck with the testing Bluegrasslady. It seems strange to say it but your posts do seem more positive even now. Maybe taking some action, sorting out the insurance and making some decisions about the way to move ahead has helped? Good on you. And your band sounds great!

I've seen the change in you, too. You are become pro-active and less reactive. This is a tough time for you and your family. I am so glad you are active in your blue grass band. My husband plays blue grass banjo and loves it. .

You’ll find free long term care insurance quotes online. Because these aggregator websites represent hundreds of insurance companies, you’ll have a better chance at finding the best value for the cheapest rate. Make sure you go through the scope of the policy very carefully so that you know the kind of benefits you will get, when your policy will kick in and for how long.
Long term care benefits provide costs for assisted living services. This would be things like help in getting dressed, taking a bath, running errands for you, cooking meals, helping you eat and making sure you are taking your medication regularly. The premiums are expensive and most experts advise buying these policies when you approach your 50s. BTW - great job on the band!

Denise Mancini
Disclaimer: I work for AccuQuote and this is my personal opinion.



Edited 1 time(s). Last edit at 09/13/2013 06:54AM by DeniseMancini.

Medicade pays for my wife's LTC. In my state, I can work and live and hold the house without worrying.

But if I should die, all of our assets would go to the State.

So, we've had to postpone predictive testing, because obtaining insurance isn't working out as smoothly as we'd hoped.

We were told, initially, that in order to obtain LTC insurance, my husband would only have to answer some questions over the phone and submit records from his most recent physical examination. He did both. Now, however, the company is setting up a home visit, which will involve "questions about your family history." Argh!

He did have a home visit before we got our life insurance, and that went fine: he only had to give blood samples, a urine sample, get weighed, etc. No questions about family history of genetic disease were asked.

What's really frustrating is that I think it might be MY medical records (or my refusal to submit them) which is raising suspicion. When we initially applied for both life- and long-term care insurance, we were told that we could get a discount if we obtained insurance on both of us. Getting it on both of us, in fact, would have been CHEAPER than getting it on just him.

The problem is, the companies wanted to see my medical records. Unfortunately, my most recent visits have been counseling appointments in which I talked about my fears and the difficulty I've had in coping with the at-risk status of my husband and son (and to think, I thought I was doing the right thing by getting counseling!) If progress notes were written (which, I'd assume is the case), these will volunteer the history on my husband's side of the family.

So, we've been adamant that, no matter the increased cost, we only want insurance on my husband. Unfortunately, I did authorize review of my records initially (thinking, hey, why not get insurance on both of us, and save some dough?) A day later, realizing what my records held, I rescinded the authorization. The company said they wouldn't look at my records, and would just proceed with the application on my husband.

What if they looked, anyway? Might they have? Did it raise suspicion that we were so adamant that we wanted coverage on only him, even though it would cost us more? Ugh!!!!

(By the way, there is nothing in my husband's medical records about HD.)

I guess we'll see what happens. The plan, at this point, is that if he's asked about history of genetic disease in the family, he just won't answer, and we'll withdraw our application. (Better than answering "yes" and being denied, I figure . . . then, if we try with another company, we might have to disclose that we were denied by a previous company).

I might be needing advice from others on companies that don't ask . . .

This is such a headache.

Oh, and does anyone have any knowledge about what we might do to protect assets in the event that we cannot obtain LTC care insurance on my husband, in the event he does need to go into a nursing home? Might we create an irrevocable trust with me (or my son) as beneficiaries, and have its funds sheltered from creditors, including the nursing home? Might that prevent us from having to spend-down to nothing in order for him to qualify for Medical Assistance? (I mean, we'd still have to spend-down, but maybe the assets in the trust would be protected . . . )

We don't even have any assets, now, but we're hoping that someday, we will, which is why we so desperately want LTC insurance.

The company we're working with right now is Genworth. We have life insurance through State Farm.

Because the rules for Medicaid change almost daily it will be pretty hard to be absolutely certian your protecting assets from future issues.
Too many unknowns. Your state will have specific rules. An irrevocable trust will not protect assets from Medicaid and is used mainly to avoid probate. The only surefire way I know of is to be single and keep all assets in your name (extreme).
There are two issues to look at here. Your list of assets and the family's monthly income. Each state has rules as to the home and how much in assets you can keep. In most states the spouse can keep the house and a certian amount of the hd+ spouse's income (disability, ssdi) and all of their own income. If there are children at home then you might be able to keep a larger amount.

You need to research your states laws regarding medicare but keep in mind that by the time you need it, the rules will probably have changed again.

One thing to look at with the LTC policy is how long it pays when the phd does go into a home. What I've found out is that many have a set amount of years they will pay. 6 years being pretty common. 1 year to move assets and 5 for the lookback for Medicaid. Others will have a $$ cap. They'll pay until you reach that cap. Be sure to ask when applying.

Good luck.

Thanks, Indigo.

I've done some research and am aware of the 5-year lookback for Medicaid purposes.

Divorce IS pretty extreme.

People have been telling me how I seem to be doing "better." I appreciate the feedback. I'm not so sure, though. I HAVE been attempting to be proactive, that's for sure. My husband has not been very cooperative. He keeps saying, "Whatever, let's just not worry about it." He doesn't want to have to give up cable TV. I don't want to have to be living below the poverty line in 15 years, with a minor child, because all of our assets have to go toward a nursing home.

I also don't want my child to be hurt by his grandmother.

I'm seriously contemplating divorce. Aaaahhhhh! I love my husband. I'm tearful now, saying it. I wanted to take care of him, "til death do us part." I still do. We're at such an impasse, though, regarding his mother.

She is so abusive and unreasonable. She withheld information from us, for selfish purposes (a huge issue, for me). Our child could pay for her selfishness with his life. My husband maintains that he "loves her, no matter what."

I've wanted to call child protective services on her (probably unreasonable, but I'm sooooo afraid to permit my son to be around her without my supervision . . . and she HATES me.)

What I've learned is, since she doesn't have "custody", in order to prevent her from being around our child unsupervised, I'll have to just deal with it through my husband (unless we're divorced and it's part of the decree). It's not safe for our son to be held by her. My husband has compassion for her desire to hold the baby, and walk around with him, if that's what the baby needs. (Sometimes, our baby cries unless he's walked. My husband doesn't want MIL to have to hold him only when he's crying (the kid's got good intuition, in my opinion, and doesn't particularly like Grandma--he cries when she holds him)). My husband insists on letting her walk around with him in her arms, because "Grandma" throws a fit and cries if she's not permitted to. We've got hardwood floors. I'm NOT okay with it! I think he's putting his selfish mother's desires in front of what's safest for our son. I do not want our son dropped! And she falls, a LOT! Like, daily. So, even though I dislike her so greatly, I'm on her like white on rice while our son is in her arms. I'd rather not be around her at all, but I just don't feel I can trust my husband to protect our son in her presence if I'm not there. And, unfortunately, I can't always be there (unless we get a divorce and that's part of the decree (having me there or, alternatively, a social worker or something)).

Our band is recording an album on Dec. 11, for 8 hours in studio, and my husband wants his mother to come over during that time. I feel like I'll either have to cancel (and disappoint the whole band), or attempt to bring the baby (and upset my husband . . . and probably not be particularly popular with the rest of the band for doing so--although they all do love him!), or "risk it" and leave the baby home with the hubby, who might permit MIL to do things with him that I feel are unsafe.

What should I do? (And, keep in mind, our baby has two parents. I can't just "decide" everything. At least not now, without a court order (i.e., a divorce decree) outlining what is permitted and what is not.)) If Hubby wants to take the baby to his mom's, there's not much I can do to stop him. I try, though . . . which has been a big source of conflict. So far, I've managed to be there, supervising. I don't know how long I can insist, though, with success . . .

OMG! This makes me so mad! You want to call child protective services on your motherinlaw???!!! And of course your husband still loves his MOM! First, why is a newborn baby being taken anywhere without you? Second, you are right, is mil needs to be told, plain and simple, she can only hold the baby while sitting, period. Get a rocking chair, simple solution. And third, you need to decide if you can partner up with your husband, the two of you, and actually agree on some things! And fourth, if i were your husbsand, i would be changing my mind real quick about testing, knowing that you may turn out to be his biggest enemy. You know, you guys have a baby to think about, that does NOT need all this drama. And yes, i am frigin mad! So i do hope you get some support and empathy too, which i know others will give you, and which you also deserve, but your reactions are making me mad, so that's all i can say about that.

PS You say the mil and husband are taking risks with the baby? Well yeah you're absolutely right! AND THEN, you have the nerve to say, should I take the RISK of leaving the baby with my husband and mil for 8 hours while i go off and do a frigin recording with your band?????????? Well uhmm, you tell me, who is just as guilty of being a risk taker???? How dare you too, KNOWING that it is a RISK. You are guilty of EXACTLY the same thing! And you get a babysitter taboot, and get to off with your band. Now you tell me who is being selfish, self centred, and taking risks!



Edited 3 time(s). Last edit at 12/03/2011 04:49AM by Barb.

Barb, my band is a job for me. I get paid. I cannot just "quit," or not go to work when required to on the weekend (any more than I could for an any other job) because I need to supervise my child 24/7. The money is needed for our family, now more than ever. Things are really, really tight for us.

I guess the question of whether I should "risk" leaving him unsupervised with my husband and MIL was rhetorical. I would not risk that. I definitely see your point, though. If I WOULD take that risk, I'd have no leg to stand on, would be "just as guilty," etc. I wouldn't, though.

That's why I'm asking for help. And that's why I'm considering obtaining paid childcare to supervise when I cannot be around. (I've paid a responsible sitter to watch our son when I've had counseling appointments or band obligations during the week and my husband has been at work.)

The problem is, if I'm not home, and my husband IS, he could potentially send the childcare provider home (and probably would!) and then do what he wants to with our baby, including let my MIL take unsafe risks with him. My husband is our son's parent, too, and his decisions carry as much weight as mine do, unless and until there is a court order stating otherwise/prohibiting certain things/etc. (And he'll think it's ridiculous to have a babysitter around while he's home.)

I guess I felt that, perhaps, child protective services might have a social worker with whom I could discuss options or ideas (other than divorce and a decree spelling out precisely what is okay and what isn't) that would enable me to ensure my son's safety in my absence while he's with his other parent. Maybe it is ridiculous, but I really, really am worried for the safety of my son when I'm not around, and I feel like I need to speak with someone with experience about what I should do.

You ask why our baby is being taken anywhere without me. All I can say in response is that I don't like it, that I'm looking for help regarding it or ideas for preventing it, and that, as far as I know at this point, there's really nothing I can do to stop it because my husband is our baby's parent, too, and, just as I do, right now has 100% custody. He has exactly the same rights as I do. If he wants to take the baby to his mother's (who hates me and won't let me around), what do I do? Physically try to stop him? Not smart. Call the police? They're not going to provide much help, as this really won't seem (to them) to be an "emergency situation." Follow in a separate car, bang on the door, create a scene, and, still, probably not be let in?

I honestly don't know WHAT to do! That's why I'm looking for help.

I understand why you're angry. I'm actually really touched that you say you hope I get some empathy from others, in spite of your anger. That's really compassionate. Please try to understand that I'm trying really hard to come up with a viable solution here. Without my husband's cooperation, though, it's really difficult. I'm not trying to offend.

And, while I probably seem to some like I'm being really unreasonable/overprotective/overreactive, I really, really do just want what's best for our child, and I can't figure out how to ensure that.

I don't think you want to get child protective services involved. Thats extreme and what if they decide all three of you have issues that need to be resolved and take that baby away until you do? Child protective services can tell you there is no issue here or they can take over. I don't think I'd risk it.

Why don't you look for a babysitter who can watch your son at THEIR home? I understand your concern over MIL carrying the baby around if she falls but you're going to have to get on the same page with your husband. I'm sure he doesn't want anything to happen to your son either. A nice rocking chair sounds like a great idea but if she's not going to use it then you have a problem.

A sitter who watches children in their own home sounds like the best solution. Your husband might not be happy but you might just have to side step the issue by telling him your giving him a "free day" or something.

I think there is something to be said about mother’s intuition. Instinctively you know what is right and ok regardless of what husband & mil want, you know what has to be done. Someone is gonna be pissed off but the child will be safe.

Pete

edit. Laura's LTC terminates at age 65.



Edited 1 time(s). Last edit at 12/03/2011 04:27PM by lauraandpete.