Old 06-17-2018, 03:19 AM #1 (permalink)
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Default VA coverage for 24 hour care?

Hi, everyone. This is such a wonderful community you all have built. I have learned so much already and am so grateful for this resource.

My friend has very recently been diagnosed with ALS, bulbar onset. Diagnosis was only about 3 weeks ago, but things have been progressing rapidly as his symptoms were misattributed for some time. He was given 3-6 weeks prior to his vent and peg surgeries (which were just completed), which extends his time hopefully to a year. He is currently in the VA in ICU healing from surgeries.

We are currently exploring options of what to do/where to go next. I have been considering the possibility of helping care for my friend once he leaves the VA, but I honestly don't know how feasible that is. I'm in contact with his social workers, but I'm still unclear what could be covered by the VA in terms of care. Is it at all possible to get 24-nursing care in a private home? The VA won't allow for respite nurses to touch the vent (??) but will cover up to 18 hours per week. How is this possible to do? Even if I am trained to handle the vent, I'm just one person. I'm doing the best I can to think out all scenarios, but honestly, I'm terrified. I have professional experience caregiving, but that can't compare to caring for a loved one. How can you afford to cover 24 hours while not having completely under qualified and/or underpaid people in your home? Is adult foster care the best choice?

I realize I've dumped a ton of questions, and this may or may not be the best place to post this, but please--I need any advice you have the time to give. Regardless of whether he moves into my house or not, I plan to stay involved as long as he'll let me. I just need some guidance in figuring out how best to do that.

Thank you all so much for being here.
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Old 06-17-2018, 03:46 AM #2 (permalink)
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Default Re: VA coverage for 24 hour care?

Hi, Libby -- I'll leave it to the VA mavens here to answer your question about reimbursement, but know that several women here have cared for their PALS on a vent with part-time professional to only family help, so I'm sure they'll have more to say. We also have at least one vented member here, Diane H, whose husband is essentially her sole caregiver, whose pages provide great resources on what the process is like. And here, you can use the search dropdown up top to look for terms like vent, PEG, etc.

So short story, all things are technically possible but you will need to ponder your other commitments, your home (e.g. is it wheelchair-accessible?), lifestyle and more.

So expect more feedback in the morning, but meanwhile a thank-you on behalf of your friend for being willing to step up.

Best,
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Old 06-17-2018, 08:55 AM #3 (permalink)
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Default Re: VA coverage for 24 hour care?

Libby, once my husband was vented the va offered 12 hours skilled nursing 7 days a week. I know of one othe vet who had 24 hour nursing. Ask the social worker what it will cost to place him in a facility...the formula, Iím told, is half the cost of placing him in a nursing home. Does your friend have no family willing to care for him? If not, you will need a POA. Tell the social worker they either pony up the nursing care or they need to find placement for him. Sometimes you have to push hard. Advocating for a PALS is a huge effort, caring is a 24 hour job. I know people who do it on their own, but I honestly donít know how.
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Old 06-17-2018, 05:49 PM #4 (permalink)
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Default Re: VA coverage for 24 hour care?

Hey, Libby.

Thanks for stepping up. My wife was a rapid mover, too, less than one year from first symptom to death.

Caregiving for ALS is the world's hardest, most tiring job. But we do it. At some point it means picking up the man, sitting him on a toilet, holding him steady while he poops, then keeping him from falling over while you also wipe his butt clean. That's the easy "stage" of rapidly moving ALS. After that stage, it gets difficult.

At some point, he won't be able to scratch his itches, so you will. He won't be able to move a painfully stiff joint, so you will. This is a 24/7 thing, so the caregiver needs to work 24/7 to keep the PALS comfortable.

VA has a local budget process with local policies to fit their local situation. So they might allocate too little to you. You need to explain the nature of ALS to them and persuade them to allocate more money to your PALS case.

First up, make sure his papers are done and his affairs are in order. Will, insurance, estate, etc. See the 10-page PDF at the top of this subforum for a big list of VA benefits he can get.
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Old 06-17-2018, 08:45 PM #5 (permalink)
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Default Re: VA coverage for 24 hour care?

Hi Libby,

A couple of thoughts to think about in your planning. With a gtube providing nutrients and fluids and a vent breathing for him it is possible that he could live a lot longer than one year. My husband started ALS with respiritory failure and came home trached/vented and a gtube. For some bizarre reason I thought he only had a few months to live . He was 77, with many serious medical conditions and lived for 4 more years.

Another consideration is the cost of private pay for the hours the VA doesn't cover and the difficulty of finding agencies/nurses who will take care of someone on a vent. When the time comes, most hospices will not accept someone on a vent so it's likely that help won't be available.

What a wonderful friend you are to be tackling this difficult process. Sorry I can't help with VA questions. Kate
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Old 06-22-2018, 02:38 AM #6 (permalink)
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Default Re: VA coverage for 24 hour care?

Just an update, since I want to stay involved in this community. My friend and I have had some frank discussions, and we determined for many reasons my house is not suitable for his care. His goal is to move into a private apartment on a HUD voucher, and have skilled nursing care a few hours a day, and independently looking after his own vent throughout the day. His social worker and I are trying to be supportive, but vocal with our concerns for this plan. We're looking for an adult foster home with care already in place, but the VA doesn't contract with any locally.

Trying to take things one step at a time, being that squeaky wheel, and laughing at what we can. I've nominated myself as his patient advocate/unbiased case manager...? Basically, I tell him dirty jokes and do what I can. Thanks to this group, I learned about the Service-Disabled life insurance which no one had covered yet. His social worker is a dynamo and has helped him get a lot of his affairs in order. I think we're doing all the right things, so thank you for all your advice.
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Old 06-23-2018, 03:32 AM #7 (permalink)
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Default Re: VA coverage for 24 hour care?

Libby, thank you for being such a great friend! A patient advocate is the most important thing, dealing without organizations and doctors can be a full-time job and I'm glad you're not becoming a full-time caregiver on top of that. Dirty jokes go a long way, too. Good topic to stay involved with this community, just dish them out in the offtopic forum.
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Old 06-23-2018, 11:14 AM #8 (permalink)
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Default Re: VA coverage for 24 hour care?

I am no VA expert, but on a vent your friend will need 24 hour care regardless of anything else, that’s just a fact. You are amazing to be stepping up like this.

As to HUD housing, being in that field myself I can say with some authority that will very likely take take time he very likely does not have. Waiting lists are very long, even with any applied preferences for vets or disabilities ( and those frequently don’t apply).

Again,you are a great friend.
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Old 06-25-2018, 12:51 AM #9 (permalink)
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Default Re: VA coverage for 24 hour care?

Probably not. What you need to understand with the VA is about 10 years ago they made ALS 100% sevive connected. Now, this was great for veterans, but the problem is the law wasn't really adjusted for the needs of ALS. It sounds like you are in the infant stages of this process. I doubt he's going to get HUD vouchers because his disability check will be $4k+ per month. If you haven't applied for that, do so immediately. 2nd the VA will adapt your current house or build you a new one. Trust me, I did it and it's a ton of work, but worth it. Once you apply for disability, you will get mail regarding the SAH (specially adaptive housing). The benefit it 280k. Take advantage of it, the veteran earned it!
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Old 06-25-2018, 11:52 AM #10 (permalink)
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Default Re: VA coverage for 24 hour care?

LIBBY, Is he otherwise homeless. Look at the VA's program called HUD-VASH.

LENORE, will VA disability compensation count against Libby's friend? It is not taxable. It is compensation, not earned income.

SONOFAGUN, I’m proud of both you and your dad. I appreciate all you did for him. Believe me, we all know how hard it is. And it is really difficult to navigate all the benefits available to disabled vets.

Sorry the Nashville PVA and DAV were not more helpful. I found the PVA local volunteer and the PVA national office to be incredibly, vitally helpful. They introduced us to benefits, filled out the forms, and expedited our application for benefits through the right people, so our VA regional office was perfectly on top of things.

We used VA docs and civilian docs (using both Medicare and Tricare) and kept them coordinated so each knew what the other was doing. Worked out real well.

EVERYONE: Detailed benefits are at the top of this subforum in a 10-page PDF document called GUIDE TO VETERAN BENEFITS (for ALS).
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Old 06-26-2018, 01:04 AM #11 (permalink)
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Default Re: VA coverage for 24 hour care?

Thanks for all the feedback! I'm learning quickly that every step in the process is really more like 3 or 4, but we're still making headway.

My friend already has the HUD-VASH voucher, but as I'm learning, that may not have been the harder part. HUD-VASH approved housing is pretty scarce. I've been making my way through a 250-page document about the program, hoping that it might be easier/allowable to find a new landlord who would be amenable to the program. But, exactly right, infant stages. Living situations in Portland are pretty tight as is. Sonofagun has a wonderful idea with adapting housing, but I'm just worried about the time. But, I'm open to exploring all options!

Mike, your guide to benefits has been a great reference. Thank you so much. Also, I've made contact with someone in the PVA and am anxious to pick her brain!

You all are so great. Thank you.
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Old 06-26-2018, 04:54 PM #12 (permalink)
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Default Re: VA coverage for 24 hour care?

A couple things on "time". I studied the rules/law extensively. Portland is a big city, so I would start by asking VA or ALS clinic if they know of a SAH qualified house on the market. This would come from someone who recently passed and did the legwork for you.

My dad didn't live in a large market, so I looked into a couple of out of the box options because with ALS, time is against everyone. I met with track home builders in the area (they don't even need to be VA qualified). I took the 10 pages or so of requirements and asked how close do their floor plans come to meeting the requirements? I had some that were really close, but were going to require some reconstruction. After meeting with about 5 of them I found somebody that would modify their plan before construction. I wrote an addendum on the contract that stated the house must pass SAH inspection before closing.

The VA will even review the blueprints and assist the builder with any questions. They were done in 4 months. A VA official in DC called me and commended me on the project stating the VA had never thought of doing it that way as "custom builders" take much longer and are hesitant to take on these projects. He said we were the first he knew of to do this.


But again, if your resources are limited see if anyone is aware of a previously qualified home for sale.

Last edited by ShiftKicker : 06-26-2018 at 06:14 PM Reason: paras for easier reading
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Old 06-27-2018, 05:13 AM #13 (permalink)
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Default Re: VA coverage for 24 hour care?

Great he has the HUD VASH. Everything but tribal money usually counts as income. There are however large d ducts for medical expenses beyond 3% of income. As you say though getting the voucher accepted by an owner is another matter.

Very glad for him also to have the VA benefits.
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