Accelerated death benefit / life insurance

[BlsdMama]

I have two policies and both have accelerated death benefit, meaning that I can collect half the policies before I die when I am deemed to have 12 months or less. I've been a very slow progressor, initially diagnosed with PLS, then SPS, then PLS again, and finally 1.5-2 years ago cementing the ALS diagnosis. I had a bit of faster progression this past year with my diaphragm finally being impacted. I was lower limb onset, but I am now impacted all four limbs, speech mild/mod, still eating though I don't do great with liquids, not losing weight, but now need helps with most everything. The question is - it is nearly impossible to predict a course length.

Today's visit showed FVC further decline. My upright FVC was around 60, but lying down was mid 40s. They ordered a cough assist, suction, and some sort of non invasive ventilation for night. I currently have no plans to be trached. As a slow progressor, I've had the luxury of saying, "We're not there yet," but after today's visit would it be a reasonable ask to request the paperwork be filled out? My DH is working from home for the foreseeable future which is an incredible blessing, but we have eight kiddos still at home, six of them are 9-16. It would be a huge relief to use the money to take weight off him for nursing care, cleaning help, etc.
Any been there done that advice?

 

[lgelb]

Sorry to hear of your progression. Let me know if you need help with the BiPAP. The initial settings for most PALS need tweaking, but with your continuing to eat, that is even more likely.

I presume your neuro would be the one to certify 12 months or less? Or your PCP? Is one willing?

Short answer: many PALS at your stage live 2+ years. But the real question is this -- if a doc is willing to certify this for you, and you are still alive this time next year, are you going to feel that you mistimed collecting the pre-death half? If you can confidently say no, then there is no down side. No one can say one way or the other -- it's your policy and as with any other asset, you should manage it as you see fit, within the letter of the law.

 

[KimT]

I knew a PALS who lived more than three years after he got the insurance. As Laurie says, it's up to your doctor. It doesn't have to be your neurologist. Pick the most compassionate doctor who understands your situation. The man I was referring to had his filled out by a pain management doctor whom we both saw.

Sorry your progression got faster. Mine did, too but it was so super slow that I'm still grateful and mine started out pure lower motor dominant ALS.

 

[okbangel]

Does anyone know where you can get funeral insurance after diagnosed with ALS or is it out of the question?
B

 

[lgelb]

Yes, there are some no-questions policies, though you have to see how they pencil out.

I would also take a look at the Funeral Consumers Alliance and see if there are members in your area. These tend to be the lower cost options/not for profit, so your money will go further.

 

[Nuts]

We looked into accelerated death benefits, and just as we were about to pull the trigger, learned that on one of the policies if he did not pass within a year we would owe interest on the money at 10% a year. Be sure to ask if there is a penalty if he lives longer than a year.

 

[Ed340hp]

Have someone closely read the terms of the policy(s). ALS and end stage renal disease usually have special cash out terms.

I cashed out a term-life policy that I paid through work withholding at 75% of face value in 2017, with no clawback penalty, a year after approval of my LTD policy and SSDI.

Later when my former employer paid me my ESOP shares in 2020 I found they insured me with another smaller term-life policy that also has a 75% early cash out. The only restriction is that it remains valid for death at 100% until I am 67 when the death benefit expires, if I do not take the early cash out before 67.

I also had a small whole-life policy I started when I was 16, where the total principal plus interest value was more than the policy face value, and they paid me the greater total value with no questions.

Using the cash out for home improvements or other ALS related care can reduce the stress on family, a big plus with reducing your own stress. The cash out is not restricted to address ALS needs, so use it to your or your family's best benefit.

 

[Tomswife]

Funeral insurance. Another option is to preplan the funeral and pay for it. That way it is all done and loved ones aren't doing this while grieving.

 

[krnNdug]

The only issue with this is if you don't have the money. I went to numerous funeral homes, cremation services and would have paid for them, but at that time we didn't have the cash to do it.

Now, post COVID-19 started, my wife's business of 32 years is gone and had been impossible to create any interest. She is 67 and doesn't want to start over. She has her own physical problems, me with my ALS, her mom with late stage Alzheimer's and 3 of our grandkids are in behavioral hospitals. Those 3 and 1 other are adopted foster kids, with one being left in a closet and his sister kicked in her bedroom but the 1 foster parents. The other 2 are meth babies.

Needless to say there is stress and no money. When I do die she will put it on a credit card and pay it off when my insurance pays.

Our agent is aware and he will pay out of his own pocket if needed. He says that again last night at his birthday party with a cocktail in his hand.

I took a lump sum from my company's LTD and we are using money from an insurance product I bought and has more than doubled. But we need to repipe our plumbing ($22K+). A lot of minor t home repairs and significant drywall and door jam damage as I learned how not to drive my chair indoors.

On another point on initial post. A friend submitted me to the Dream Foundation. It is for people not expected to live a year longer. My FVC dropped quickly and my doctor said that I already had ALS for over a year and it is impossible to determine if I would just longer. I have. April 8, 2023 will be 9 years I did let DF know at I lived longer than a year. They were ok with it.

This is a hard disease in many aspects. Planning a funeral, cremation or other end of life things shouldn't be as hard as it is. Thankfully we now get Medicare day 1. Many companies have paid for insurance for their employees which means leaving them "employed" with or without a salary.

I will continue to Look on this thread with interest.

D

 

[lgelb]

I'm very sorry about your and your wife's situation, Doug. I can't imagine what you've been through.

Re arrangements, your state's FCA price/service list is here.

Also, just a periodic reminder that no one type of arrangement rules out others. If you're cremated, there can still be a service; many states now include more choices as to natural burial; everything can be mixed and matched.

For those in states without an FCA, if you search on funeral cooperative and your location, you can often find some options.

 

[krnNdug]

Thanks. I know that and should have included it. Karen and I had a movie night. Almost every night with all the streaming companies.

 

[Tomswife]

I am so very sorry. Kathy