Expenses due to aging/disability
August 25, 2021 12:15 PM Subscribe
I am looking for concrete examples, in the U.S., of out-of-pocket expenses (i.e., not covered by insurance or other assistance) due to disability or aging, the more specific the better. Examples for people who are not partnered would be especially helpful. I'm trying to get an idea of how much of a buffer I need in my retirement savings.
Any type of long-term care will not be covered by insurance, unless you buy specific long-term care insurance, which is expensive. Medicare covers IIRC something like 90 days of nursing home care after a qualifying hospitalization — nothing further. If you need long-term nursing home or in-home care, you are on your own. Look up average nursing home costs in your area. Where I live, it is $7-8000 per month. Consider that this will probably go up faster than inflation.
Your other option is to “spend down” all your money and assets until you are poor enough to qualify for Medicaid, which will pay for long-term care. But not all facilities accept Medicaid.
posted by snowmentality at 12:53 PM on August 25, 2021 [1 favorite]
Your other option is to “spend down” all your money and assets until you are poor enough to qualify for Medicaid, which will pay for long-term care. But not all facilities accept Medicaid.
posted by snowmentality at 12:53 PM on August 25, 2021 [1 favorite]
Medicaid does cover long term care for certain conditions. You just dont get to pick where they put you. I spent many hours on the phone with elder advocates verifying this (my mom has early stage dementia and not much savings)
Their advice was to get my mom into private elder housing (low supervision ones run about $4k a month) before things got to the point of needing Medicaid. Apparently if you're already established at a care home, Medicaid will continue to pay for that institutions care, even if supervision needs go up.
Theres more to it than this, of course, so I encourage you to contact an elder advocate in your state so they can go over some details with you. They will know all the current regulations and can help budget. Also their advice is free!
posted by ananci at 1:00 PM on August 25, 2021 [2 favorites]
Their advice was to get my mom into private elder housing (low supervision ones run about $4k a month) before things got to the point of needing Medicaid. Apparently if you're already established at a care home, Medicaid will continue to pay for that institutions care, even if supervision needs go up.
Theres more to it than this, of course, so I encourage you to contact an elder advocate in your state so they can go over some details with you. They will know all the current regulations and can help budget. Also their advice is free!
posted by ananci at 1:00 PM on August 25, 2021 [2 favorites]
So cancer treatment can be more expensive than most people can possibly imagine. And there isn't currently parity for cancer treatment that is given as prescription drugs instead of infusions. I'm now on a cancer drug that's a pill that runs over $22,000 a month and that I may be on for the rest of my life (and that thank god seems to be working right now). People who don't opt for Medicare's prescription drug coverage are totally screwed. And even with coverage, copays can run $1000/month or more.
What a lot of people do is get so-called "scholarships" from the drug companies to get coverage for these drugs (which they can provide by charging exorbitant prices to everyone else). There are also charities that exist specifically to help people pay for cancer medications.
People focus on long-term care, which definitely deserves attention, but the cost of cancer drugs can make long-term care look like a bargain. My aunt's long-term care five years ago was running $8000/month.
My understanding is that supplemental Medicare coverage varies from state to state. This is definitely something where it would be worthwhile to consult with an expert in your state to try to figure out worst-case scenarios.
posted by FencingGal at 1:19 PM on August 25, 2021 [2 favorites]
What a lot of people do is get so-called "scholarships" from the drug companies to get coverage for these drugs (which they can provide by charging exorbitant prices to everyone else). There are also charities that exist specifically to help people pay for cancer medications.
People focus on long-term care, which definitely deserves attention, but the cost of cancer drugs can make long-term care look like a bargain. My aunt's long-term care five years ago was running $8000/month.
My understanding is that supplemental Medicare coverage varies from state to state. This is definitely something where it would be worthwhile to consult with an expert in your state to try to figure out worst-case scenarios.
posted by FencingGal at 1:19 PM on August 25, 2021 [2 favorites]
Some expenses for cancer that would not be covered by insurance would be: foods for any special dietary needs (which might be more expensive), "comfort items" such as different clothing that might be wanted by someone getting chemo or radiation, for breast cancer new bras and other clothing might be desired, transportation, housing if one needs to travel for treatment, grocery delivery expenses if unable to deal with one's own shopping.
The "not covered by other assistance" is a bit fuzzier -- there are lots of different programs out there to help cancer patients. Maybe a church food pantry could help with special dietary needs, or there might be a local program that provides hats to chemo patients, another program that helps women who need professional clothing that would have bras, groups dedicated to providing free rides to cancer patients, hospital social worker might be able to get someone into special patient housing near the hospital, could ask around if someone can deliver groceries for you. BUT someone who is not partnered or otherwise doesn't have someone in their life who can spend a lot of time on tracking down all these resources will have a much more difficult time accessing them.
And of course there is the whole matter of what medical bills are and aren't covered by insurance, deductibles, etc. My experience is that there are often surprise things that aren't covered. Doctors at hospital x are covered but your doctor actually works for a contractor, medical office says "oh we take abc insurance" but then you get everything set up and scheduled and show up and they say "well not that kind of abc insurance, see your plan number ends in 567 and it says in this big binder we have that we don't take abc if the number ends in 567.
I don't know much about how Medicare/caide work but you might be wanting to retire before you get to the age where they kick in.
One expense you might consider, since it sounds like you are planning for not having anyone close to you who could advocate for you, is hiring someone who would be able to have some sort of advocate for you. There are different types of services offered by patient advocates, elder care attorneys, probably other professionals in this field as well. I don't know much about these services other than that they are out there.
posted by yohko at 1:32 PM on August 25, 2021
The "not covered by other assistance" is a bit fuzzier -- there are lots of different programs out there to help cancer patients. Maybe a church food pantry could help with special dietary needs, or there might be a local program that provides hats to chemo patients, another program that helps women who need professional clothing that would have bras, groups dedicated to providing free rides to cancer patients, hospital social worker might be able to get someone into special patient housing near the hospital, could ask around if someone can deliver groceries for you. BUT someone who is not partnered or otherwise doesn't have someone in their life who can spend a lot of time on tracking down all these resources will have a much more difficult time accessing them.
And of course there is the whole matter of what medical bills are and aren't covered by insurance, deductibles, etc. My experience is that there are often surprise things that aren't covered. Doctors at hospital x are covered but your doctor actually works for a contractor, medical office says "oh we take abc insurance" but then you get everything set up and scheduled and show up and they say "well not that kind of abc insurance, see your plan number ends in 567 and it says in this big binder we have that we don't take abc if the number ends in 567.
I don't know much about how Medicare/caide work but you might be wanting to retire before you get to the age where they kick in.
One expense you might consider, since it sounds like you are planning for not having anyone close to you who could advocate for you, is hiring someone who would be able to have some sort of advocate for you. There are different types of services offered by patient advocates, elder care attorneys, probably other professionals in this field as well. I don't know much about these services other than that they are out there.
posted by yohko at 1:32 PM on August 25, 2021
Basic home care supplies are often not covered. Walkers, wheelchairs, shower chairs, diapers, leak-proof bed pads. Unless you’re on hospice, and that is quite a big hammer that they wield, however empathetically.
posted by SLC Mom at 2:08 PM on August 25, 2021 [3 favorites]
posted by SLC Mom at 2:08 PM on August 25, 2021 [3 favorites]
Consider the cost of remodeling a home so that an elderly occupant can easily get around. Having the bedroom, bathroom, and kitchen on the same floor is desirable, as stairs become more difficult for the elderly. Consider the cost of installing handrails and a walk-in shower in a bathroom, a wheelchair-accessible ramp from the exterior to the interior, etc.
posted by cleverevans at 2:27 PM on August 25, 2021
posted by cleverevans at 2:27 PM on August 25, 2021
These costs are going to vary heavily by location. The AARP Cost of Long Term Care Calculator and Genworth Cost of Care Survey both let you look at various types of care by ZIP code or city/state. There are descriptions of the types of care that can help you determine which is most likely to apply to you (e.g. in home care vs residential, assisted living vs skilled nursing care). You may eventually need to consider whether paying for your home to be liveable for you is financially more feasible than paying for residential care. These calculators can help you find a tipping point for that (it's usually somewhere around when you start needing care overnight in addition to any part of the day).
Using Medicaid for long term care is complicated and depends on your state as these programs are state-run. Income requirements and available programs will vary--you can learn the basics here.
posted by assenav at 2:43 PM on August 25, 2021 [1 favorite]
Using Medicaid for long term care is complicated and depends on your state as these programs are state-run. Income requirements and available programs will vary--you can learn the basics here.
posted by assenav at 2:43 PM on August 25, 2021 [1 favorite]
Hearing aids. Most people need them as the age but they are not covered by Medicare or most insurances.
posted by Lutoslawski at 3:50 PM on August 25, 2021 [1 favorite]
posted by Lutoslawski at 3:50 PM on August 25, 2021 [1 favorite]
Transportation is a big one. If you need to stop driving and you don't have access to a robust public transit network, you'll need to be able to take taxis/Ubers/Lyfts or whatever to places. And even if you do have access to public transportation, often older people are less able to walk 4 blocks from the bus stop to their destination.
Chores in general are a big factor. Maybe you're able to manage your personal hygiene and cooking, but can you go grocery shopping? Mow the lawn? Clean the gutters? Put a fitted sheet on a bed? Get on a ladder to change a lightbulb? There's a wide range of activities that need to be done to effectively function at home, and typically no insurance will pay for anything other than very basic housekeeping (and most won't even do that, or if so only for people who are very disabled). So if you need those things done and you can't do them yourself, you'll need to pay for it.
Health equipment & medication: sure, a lot of it is prescription. But things like an over the counter knee brace to see if it helps your arthritis, or a supplement that might help you sleep better, or the CBD cream that your friend swore was a miracle for her arthritis, will not be covered by insurance. Hearing aids are notoriously poorly covered (Costco FTW).
Copays: Physical therapy, which pretty much all old people need at some point, can be quite expensive even with insurance ($35 twice a week, for example).
Living space: Older people don't need as much physical space as younger families, but typically do benefit from certain amenities: elevator buildings, or single story homes. Covered parking. Etc.
Obviously a lot of older people remain able to do these tasks pretty well, but many don't.
posted by The Elusive Architeuthis at 10:14 PM on August 25, 2021
Chores in general are a big factor. Maybe you're able to manage your personal hygiene and cooking, but can you go grocery shopping? Mow the lawn? Clean the gutters? Put a fitted sheet on a bed? Get on a ladder to change a lightbulb? There's a wide range of activities that need to be done to effectively function at home, and typically no insurance will pay for anything other than very basic housekeeping (and most won't even do that, or if so only for people who are very disabled). So if you need those things done and you can't do them yourself, you'll need to pay for it.
Health equipment & medication: sure, a lot of it is prescription. But things like an over the counter knee brace to see if it helps your arthritis, or a supplement that might help you sleep better, or the CBD cream that your friend swore was a miracle for her arthritis, will not be covered by insurance. Hearing aids are notoriously poorly covered (Costco FTW).
Copays: Physical therapy, which pretty much all old people need at some point, can be quite expensive even with insurance ($35 twice a week, for example).
Living space: Older people don't need as much physical space as younger families, but typically do benefit from certain amenities: elevator buildings, or single story homes. Covered parking. Etc.
Obviously a lot of older people remain able to do these tasks pretty well, but many don't.
posted by The Elusive Architeuthis at 10:14 PM on August 25, 2021
« Older Why does my bath tub drip only when the hot water... | Effective, cruelty-free deodorant? Newer »
This thread is closed to new comments.
posted by HotToddy at 12:25 PM on August 25, 2021