Elderly parents in assisted living with new high costs; seeking advice

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slee
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Elderly parents in assisted living with new high costs; seeking advice

Post by slee » Wed Sep 18, 2019 9:41 pm

I'd appreciate any guidance/advice. My elderly parents have been in an assisted living apartment for a little over a year (moved from independent living). My mom (85) has vascular dementia and recently has had a few incidents (e.g., first time leaving the building) that have required hiring aides to be with her many hours of the day. For background, my dad (88) survived tongue cancer - and surgery and radiation - two years ago, but he is much more frail as a result. He handed over financial responsibilities to me at that time and has no interest in it now (I have POA). They both use walkers and have significant heart conditions. They’ve been married 65 years (together 70!) and I have no intention of separating them (i.e., mom to memory care), hence the personal aides. My mom’s worsening dementia (horrible disease) has been so difficult for my dad but he’s adamant that they stay together while they can.

Financially, hiring private aides basically doubles the cost of their care in our (incredibly) expensive area and their long-term care insurance will end in two months, having paid out fully (effectively paid for the past year of AL!). Between savings and income (SS & one pension), I figure they will exhaust their savings in two years. If they or one of them is still able to be in assisted living by then, I’d have the ability to pay for a while.

Questions: They moved their Edward Jones holdings to Vanguard but kept the same investments in brokerage accts. The holdings aren’t that large but I’m thinking I should consolidate (they are IRA accounts) and put them into a money market (still in an IRA for tax purposes?) or some other relatively liquid asset at this point. Does this make sense? The bulk of their savings (about $200k) are in a joint (taxable) money market account and my mom’s TDA. I figure it's not time to check with an elder care lawyer as a potential skilled nursing, etc. scenario, is not imminent. Do you agree? We updated their POAs a few months ago (to include my cousin as I was concerned about having a backup for them if something happens to me).

It’s been an emotional rollercoaster and I’m there for them but I now also want to, to the extent it’s possible, ensure that I’m making the best moves I can financially. (I do understand that with their current health, two years is a long time.) Any advice/suggestions are welcomed! Thanks

Vanguard brokerage IRA accounts (prev. Ed Jones allocations)

Father

M fund - AIVSX $35k
Bond - SBC comns 6.15% 2034-09 $14k

Mother

Stock - AT&T $4k
Stock - JNJ $16k
Bond - Northern sts pwr 6.50% 2028 $11k
Last edited by slee on Thu Sep 19, 2019 9:31 am, edited 1 time in total.

HomeStretch
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Re: Elderly parents in AL with new high costs; seeking advice

Post by HomeStretch » Wed Sep 18, 2019 11:43 pm

As the money in the IRA accounts will most likely be fully spent over the next two years, agree it makes sense to move from equity/bonds to money market funds (within the IRAs) in order to preserve principal.

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Watty
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Re: Elderly parents in AL with new high costs; seeking advice

Post by Watty » Thu Sep 19, 2019 12:42 am

HomeStretch wrote:
Wed Sep 18, 2019 11:43 pm
As the money in the IRA accounts will most likely be fully spent over the next two years, agree it makes sense to move from equity/bonds to money market funds (within the IRAs) in order to preserve principal.
I mostly agree with that but depending on what rates you can get CDs might also be an option for any money that will not be needed within the next year.
Elderly parents in AL with new high costs; seeking advice
You might also want to edit the title in your post, I thought that the "AL" was for Alabama and not assisted living so that was a bit confusing.

BarbBrooklyn
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Re: Elderly parents in AL with new high costs; seeking advice

Post by BarbBrooklyn » Thu Sep 19, 2019 6:05 am

The thing is, you should really get the eldercare attorney involved now,; at your parents' ages, things can change in a second. If a Miller Trust is needed to qualify one or both of them for Medicaid, those can take a while to set up.

Is there not a community that has AL, memory care and NH in one facility? It would make the transition so much easier for everyone.
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Lexi
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Re: Elderly parents in AL with new high costs; seeking advice

Post by Lexi » Thu Sep 19, 2019 7:01 am

A tough situation! I have somewhat similar experiences, a mother who had vascular dementia and an aunt and uncle who really needed to be kept together. The reality is that each of your parents has a short life expectancy and keeping them together as long as possible seems paramount to me. I would explore other care options especially in case either has to have a higher level of care. I would also suggest you seek out information about any hospice options in your area. Most relatives i have known who went into hospice died within days but the intention is for the last six months of life. They may not be there yet but it could be good to invoke hospice earlier than most are willing to consider it.

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Re: Elderly parents in AL with new high costs; seeking advice

Post by BarbBrooklyn » Thu Sep 19, 2019 7:42 am

Lexi wrote:
Thu Sep 19, 2019 7:01 am
A tough situation! I have somewhat similar experiences, a mother who had vascular dementia and an aunt and uncle who really needed to be kept together. The reality is that each of your parents has a short life expectancy and keeping them together as long as possible seems paramount to me. I would explore other care options especially in case either has to have a higher level of care. I would also suggest you seek out information about any hospice options in your area. Most relatives i have known who went into hospice died within days but the intention is for the last six months of life. They may not be there yet but it could be good to invoke hospice earlier than most are willing to consider it.
+1000000
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Moland
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Re: Elderly parents in AL with new high costs; seeking advice

Post by Moland » Thu Sep 19, 2019 8:12 am

Sounds like your mom should be in a secure memory care facility. You could find a memory care unit that would has rooms that can accommodate a couple. The facility my MIL is in has a husband and wife in one room. The wife is in good health with no memory issues but they can still live together. I think our mom and dad would like to be together and might save some money both being in the same room. As stated above try to find a place that has a continuum of care in case a skilled nursing facility is needed.

Lexi
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Re: Elderly parents in AL with new high costs; seeking advice

Post by Lexi » Thu Sep 19, 2019 8:20 am

An excellent book to read:
Being Mortal by Atul Gawande

delamer
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Re: Elderly parents in AL with new high costs; seeking advice

Post by delamer » Thu Sep 19, 2019 10:33 am

Lexi wrote:
Thu Sep 19, 2019 7:01 am
A tough situation! I have somewhat similar experiences, a mother who had vascular dementia and an aunt and uncle who really needed to be kept together. The reality is that each of your parents has a short life expectancy and keeping them together as long as possible seems paramount to me. I would explore other care options especially in case either has to have a higher level of care. I would also suggest you seek out information about any hospice options in your area. Most relatives i have known who went into hospice died within days but the intention is for the last six months of life. They may not be there yet but it could be good to invoke hospice earlier than most are willing to consider it.
This is a bit misleading. Patients don’t “invoke” hospice. Medical professionals make a determination that someone is eligible for hospice based on the patient’s health. For better or worse, many people with dementia can live for extended periods.

It is true that many people could have benefited from hospice care earlier than it was received.

Regarding the finances, I agree that moving their IRA assets to a money market account makes sense. Even a small loss could mean a month or 2 less time together. You can’t consolidate their IRAs, unless you withdraw everything and pay the required income taxes. Just sell the assets within each IRA and buy a MM fund.

Lexi
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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by Lexi » Thu Sep 19, 2019 10:44 am

Patients with vascular dementia, unlike those with Alzheimer's, have cognitive decline that is associated with physical (vascular/ cardiac) decline. The point estimate of life expectancy from diagnosis is ~2 years. YMMV but the distribution is not like other forms of dementia.
While a physician must certify eligibility for hospice, most are reluctant to initiate the discussion. An informed patient and family can make a difference.

Mr.BB
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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by Mr.BB » Thu Sep 19, 2019 11:03 am

You should find out at what point (every state is different) that Medicad would kick in because their retirement income is depleted.
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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by RickBoglehead » Thu Sep 19, 2019 11:43 am

In addition to the comments so far, make sure you're right about them being together (it sounds like it is the right decision).

My in-laws went from being in their home together for 60 or so years to one going to hospital, then home, then hospital, then rehab. While in rehab his wife went to hospital, then rehab with him. Neither returned home, they went into a 1 bedroom independent living environment. That lasted 4 months, before we had to move MIL to a locked facility. FIL did NOT want to go with her, and was content visiting monthly, for a period of 2 years. When he needed assisted living, we put him in her facility but in a different building (connected, but only via staff doors). He was able to visit several times a week, but being in the same room would have entailed all sorts of mischief (stop, not that) such as my FIL slipping my MIL food she should not eat, helping her deceive the staff regarding any number of things, etc.
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Ranunculus
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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by Ranunculus » Thu Sep 19, 2019 11:46 am

Agree with others who recommended you inquire about hospice. Hospice will be approved by the doctor if the life expectancy is around 6 months, but once approved people can remain in hospice indefinitely. My mother's care improved dramatically when she entered hospice, they provide caregiver visits and work hard to improve quality of life. Hospice care is free (paid by Medicare) and the care they provide can significantly reduce your out of pocket expenses.

Are they in a continuing care facility? Now is a good time to reread their contract to learn the options as their needs change. If the facility has a memory care section it is likely they have a waiting list to get in. The facility will gladly let you hire 24 hour caregivers to provide your mother with appropriate care rather than move her to the level of care she is entitled to receive.

increment
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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by increment » Thu Sep 19, 2019 12:00 pm

Ranunculus wrote:
Thu Sep 19, 2019 11:46 am
Hospice will be approved by the doctor if the life expectancy is around 6 months, but once approved people can remain in hospice indefinitely.
Approval comes from the hospice's staff, not your own doctor. And then remaining in hospice requires periodic recertification from the staff that life expectancy is still 6 months or less. (Dementia patients can "graduate" out of hospice, multiple times.)

NotWhoYouThink
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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by NotWhoYouThink » Thu Sep 19, 2019 2:33 pm

First, I agree that it makes sense at this points to sell off the stock in the IRAs and put the proceeds in something safe like MM funds. They really can't afford to take any chances with the market. I didn't look at the bond funds, but it may be time to sell those off as well.

What happens if/when one or both of your parents needs skilled nursing? Are they in a facility that will let them stay as Medicaid patients once their money runs out, or will you have to make the choice between paying out of pocket or moving them?

startwithtruth
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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by startwithtruth » Thu Sep 19, 2019 5:15 pm

Ranunculus wrote:
Thu Sep 19, 2019 11:46 am
Agree with others who recommended you inquire about hospice. Hospice will be approved by the doctor if the life expectancy is around 6 months, but once approved people can remain in hospice indefinitely. My mother's care improved dramatically when she entered hospice, they provide caregiver visits and work hard to improve quality of life. Hospice care is free (paid by Medicare) and the care they provide can significantly reduce your out of pocket expenses.
just in case there's any confusion: a residential hospice wouldn't be free under Medicare as you still have to pay for the room and board portion; but hospice services brought to where the the person lives (assisted living; long term care, etc) are a covered Medicare benefit. I guess visiting hospice staff would reduce your out of pocket by reducing the hours you might need to pay an aide?

I agree that it's a good time to start learning about hospice options; we waited until the last minute with my father (even though he'd been "terminal" with congestive heart failure for many months), and I don't recommend that approach.

startwithtruth
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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by startwithtruth » Thu Sep 19, 2019 5:34 pm

slee wrote:
Wed Sep 18, 2019 9:41 pm
They’ve been married 65 years (together 70!) and I have no intention of separating them (i.e., mom to memory care), hence the personal aides. My mom’s worsening dementia (horrible disease) has been so difficult for my dad but he’s adamant that they stay together while they can.
My experience is that arranging, and paying for, the appropriate level of care for each person ends up being an on-going challenge as they can have such different needs. My parents had been married for decades when my mom developed dementia - she was dad's whole world and we struggled to keep them together. When my mother's dementia and physical frailty were finally too much, we moved her to a long term care facility (covered by Medicaid) and my father really grieved about the separation; in the end, he agreed it was the best/only option, and spent most days by her side (courtesy of the city senior bus) until she passed away.

psteinx
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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by psteinx » Thu Sep 19, 2019 5:48 pm

If your parents' assets are likely to be drained within 2 years, then the specifics of what they're invested with, and what broker is being used, are less important than they'd otherwise be. Sure, its a good idea to think about saving perhaps 1%/year by switching from EJ, and to get reasonable returns. But you're basically talking about moving the date at which the assets will run out by a few weeks or months, one way or the other.

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LilyFleur
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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by LilyFleur » Thu Sep 19, 2019 7:03 pm

Do you have advance care directives for both of them? The time may come when your mother aspirates and then gets pneumonia. (This is a common problem for dementia patients, and the recovery rate for hospital stays is much lower for dementia patients than for seniors without dementia.) The hospital may want to put in a feeding tube, which can be problematic for dementia patients as they can forget what it is there for and try to rip it out. You may want to meet with a geriatric care social worker so that you can plan for your parents better... There is a body of information that is very helpful to know and can affect the quality of end-of-life care.

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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by ResearchMed » Thu Sep 19, 2019 7:30 pm

Do you have plans for "what after" they run out of money, and you can no longer fully support them?

There might be some choices in terms of facilities that will "keep them" after money runs out, but the sooner they start (the more money they have when they start) could matter a lot.

Or there may be local programs.

Starting to work on this may give them more choices of facilities and also possibly lower the likelihood that they'd need to move.

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slee
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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by slee » Thu Sep 19, 2019 9:56 pm

Thanks everyone for your feedback, I appreciate your comments and suggestions. I did get to change AL earlier (thanks Watty) but now have time to respond more fully. Their senior facility provides for independent and assisted; unfortunately, there is no skilled nursing in place. On reading your comments, (a good reality check!) I see it is time to consult with our elder care lawyer and I have called her to set up an appointment. The money and its movement can be done now or sometime soon (thanks for the MM IRA confirm), but I realize it's secondary to having a better grasp on steps to take now regarding their care and residence.

Even with the dementia my mom is now more physically mobile of the two; is still social; and has clarity, if not memory, at times most days. It's so confounding. My father is clear and alert but moving less. Anything can happen I know but neither is (seems) close to hospice needs at this moment. I also know of several people who spent less than a week with hospice care but could have benefited from it (including the survivors). If the situation unfolds that way, I do plan to use it. I spoke with the social worker today (her six-month assessment) and my father hasn't changed in his low level of care (their scale); they raised my mom's score (I pointed out that the private aides are doing much of the attending), but only one level in terms of care. Unfortunately, this equates to an increased monthly charge. All the more reason to speak to our lawyer.

Among other things, I'll be looking into a skilled nursing facility that was recommended to me (it has some of the newer features mentioned in Being Mortal -- I thought it excellent too, Lexi). It has assisted living too but it may not be an option. I don't know about Miller Trusts so thanks for mentioning it BarbBrooklyn; I figure our lawyer will be able to address that and dealing with the possible need for coverage of the healthier parent who may not need NS yet.

This is a rambling post, trying to respond to a number of comments in one narrative, but I want to be clear that it's so helpful to hear from all of you, knowing many have been through this and/or are dealing with similar caregiving situations with loved ones. Many thanks! (startwithtruth - your parents' devotion sounds similar to mine; two years ago when my dad fell after completing radiation, she would take a taxi every day to his rehab center to be with him.)

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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by Ranunculus » Thu Sep 19, 2019 9:59 pm

I guess visiting hospice staff would reduce your out of pocket by reducing the hours you might need to pay an aide?
In addition to the scheduled caregiver visits, the hospice care coordinator for my mom was very focused on providing solutions to problems the assisted living facility failed to address. Hospice staff implemented strategies to reduce falls, which in turn reduced the need for additional private pay caregivers.

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Re: Elderly parents in AL with new high costs; seeking advice

Post by celia » Thu Sep 19, 2019 10:29 pm

delamer wrote:
Thu Sep 19, 2019 10:33 am
Regarding the finances, I agree that moving their IRA assets to a money market account makes sense. Even a small loss could mean a month or 2 less time together. You can’t consolidate their IRAs, unless you withdraw everything and pay the required income taxes. Just sell the assets within each IRA and buy a MM fund.
Depending on their income, an IRA withdrawal likely won’t have any tax impact if a doctor signs off on at least one of them needing to be where they are currently placed. The cost of their care could be a big medical deduction on their taxes which could cancel out other forms of taxable income.

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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by Moland » Fri Sep 20, 2019 9:26 am

Are they veterans? When their networth is down to $127,000.00 they could claim benefits. You can still own a house and pre pay burial expenses to do a spend down. If a doctor perscribes family visits you could claim travel and other expenses. If they are veterans, I would go to your local office and speak face to face with a case worker. Veterans benifit for elder care are a little known and often overlooked.
This might not apply to you but can help other readers.

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slee
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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by slee » Fri Sep 20, 2019 11:33 am

Thanks Celia, your comment brought up this question too -- can her need of personal aides (not medical professionals) be considered a medical expense/deduction? The facility would not allow her to stay without them and I maybe her doctor would sign off on it. Not sure. Most of this year's assisted living rent will be paid for by long-term care insurance but I'll check into what isn't covered as I believe it should be a medical expense.

Yes, Moland, my dad is a veteran and was aware of some benefits but mainly just knew my dad didn't quality because of their assets. Good to know it's $127k -- he's gone through the VA for his hearing aids so I know he's in its system (accessed recently). I will check with the local VA. Thanks!

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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by LilyFleur » Fri Sep 20, 2019 11:46 am

RickBoglehead wrote:
Thu Sep 19, 2019 11:43 am
In addition to the comments so far, make sure you're right about them being together (it sounds like it is the right decision).

My in-laws went from being in their home together for 60 or so years to one going to hospital, then home, then hospital, then rehab. While in rehab his wife went to hospital, then rehab with him. Neither returned home, they went into a 1 bedroom independent living environment. That lasted 4 months, before we had to move MIL to a locked facility. FIL did NOT want to go with her, and was content visiting monthly, for a period of 2 years. When he needed assisted living, we put him in her facility but in a different building (connected, but only via staff doors). He was able to visit several times a week, but being in the same room would have entailed all sorts of mischief (stop, not that) such as my FIL slipping my MIL food she should not eat, helping her deceive the staff regarding any number of things, etc.
The great thing about hospice is they can eat anything they want. And sometimes they get better and go off hospice, although vascular dementia does not get better.
The payment for my mom's personal aides was tax-deductible, although it must exceed 10% to be deductible. Vascular dementia can be quite expensive. We had to have aides 24/7 after mom broke her ankle. She would forget that she wasn't supposed to get up and would try to get out of bed (and she was fast at it because she still had been doing Pilates with a personal trainer). (So we were paying for a skilled nursing room AND a 24/7 personal aide.) Thank goodness the medical deduction is still available; it's our senior population who can really benefit from it.
I've heard someone on this forum mention tying down an elderly patient in a bed. I think that is illegal, as is compelling a patient to take meds against their wishes. Getting old isn't for cowards. And for those who are taking care of the aged, a huge dose of courage and perseverance is needed.
Last edited by LilyFleur on Fri Sep 20, 2019 12:09 pm, edited 1 time in total.

increment
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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by increment » Fri Sep 20, 2019 12:03 pm

slee wrote:
Fri Sep 20, 2019 11:33 am
can her need of personal aides (not medical professionals) be considered a medical expense/deduction? The facility would not allow her to stay without them and maybe her doctor would sign off on it. Not sure.
We have done it for my father's income taxes, but there are Rules. You need to have an appropriate care plan and an annual certification. Read the Long Term Care section of IRS Publication 502 "Medical and Dental Expenses".

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Re: Elderly parents in assisted living with new high costs; seeking advice

Post by RetiredArtist » Fri Sep 20, 2019 1:31 pm

slee wrote:
Fri Sep 20, 2019 11:33 am
Thanks Celia, your comment brought up this question too -- can her need of personal aides (not medical professionals) be considered a medical expense/deduction? The facility would not allow her to stay without them and I maybe her doctor would sign off on it. Not sure. Most of this year's assisted living rent will be paid for by long-term care insurance but I'll check into what isn't covered as I believe it should be a medical expense.
I helped my older frail relative for some years. He was not able to safely cook (would forget & leave stove on), drive (bumped into things, got lost), or exercise good judgment (invited strangers into the home, fell for phone scams, etc). We asked the caregiving agency wrote up a "plan of care", and we got his primary care physician to write a letter approving the plan. Per IRS publication 502, these caregiving expenses were medically necessary" and thus tax deductible.(of course, run this by your tax person).

Qualified Long-Term Care Services (from Pub 502)
Qualified long-term care services are necessary diagnostic, preventive, therapeutic, curing, treating, mitigating, rehabilitative services, and maintenance and personal care services (defined later) that are:
1. Required by a chronically ill individual, and
2. Provided pursuant to a plan of care prescribed by a licensed health care practitioner.
Chronically ill individual. An individual is chronically ill if, within the previous 12 months, a licensed health care practitioner has certified that the individual meets either of the following descriptions.
1. He or she is unable to perform at least two activities of daily living without substantial assistance from an- other individual for at least 90 days, due to a loss of functional capacity. Activities of daily living are eating, toileting, transferring, bathing, dressing, and continence.
2. He or she requires substantial supervision to be protected from threats to health
and safety due to severe cognitive impairment.
Maintenance and personal care services. Maintenance or personal care services is care which has as its primary purpose the providing of a chronically ill individual with needed assistance with his or her disabilities (including protection from threats to health and safety due to severe cognitive impairment).
[/i]

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