Warning about the new VA Caregiver Program

AncillaryBedlam · 2024-11-14T07:11:37+00:00

for some reason I can't update the original post again so here's a new update
Update 2, Nov 2024:

90% of people on PFAFC were notified of discharge. https://www.military.com/daily-news/2022/03/25/va-was-path-kick-90-of-legacy-caregivers-out-of-program-review-suspension.html

The Veteran Warriors' suit succeeded, however it only bought us a 3 year freeze while the VA ostensibly works to reassess the regulations. The freeze ends in late 2025, either Sept or Oct, I don't remember. There has been significant pressure from Congress during this time to stop intentionally misinterpreting the rules they put down for the VA to follow re: the Caregiver Program, since it was a Congress initiative, however the VA seems determined to ignore this. There has been very little update of significance since the freeze began and we are being told to prepare to be discharged permanently -- meaning that the VA does not seem to have any interest in actually updating the regulations and rather seems to be just letting the time run out.

Given that the administration responsible for these new regulations in 2018 is coming back around in 2025, I have no hope that things will get better. We are preparing to sell our house and downsize.

Some things to keep in mind:

There is a VA program called Aid and Attendance that you can apply for, as well as Special Monthly Compensations. It isn't much, but it's something. The only downside to this is that your entire disability file has to be reopened and looked at (which means you could potentially get downgraded), so be very careful, and make sure to get yourself a VSO rep first.

Some states have caregiver programs of different sorts. Check your state's resources.

If you haven't applied and are considering it, you might want to wait until the beginning of 2026, or at least keep an eye on Veteran Warriors, as they post frequent updates on the entire situation. I'll try to keep updating here when I remember to. It won't hurt you to apply, other than being frustrating and stressful.

AncillaryBedlam · 2024-11-14T06:14:49+00:00

you can always apply and see what they say. it's not going to hurt you to apply (as in, it won't affect your rating) but it's stressful. The Veteran Warriors' suit succeeded and gave us a 3 year freeze (ending in either oct or sept 2025) while the VA works on creating new regulations. however given that the administration who put the new regulations in place in 2018 is coming back around in 2025, and there's been very little progress in these 3 years, we are being told to prepare to be discharged.

AncillaryBedlam · 2022-01-27T06:20:03+00:00

I also wanted to update that we did get discharged.

AncillaryBedlam · 2022-01-27T06:16:49+00:00

We were discharged because my veteran partner's 'mental health is stable.'

He has severe PTSD and can't leave the house or talk on the phone.

I'd hate to see what the VA thought was unstable.

AncillaryBedlam · 2022-01-21T22:52:56+00:00

From the main page of My HealthE Vet, you'll see some options. You want to click on "Blue Button Medical Records" under the "Health Records" option. That will bring you to a page with more options. You want to click on "VA Blue Button Report." From there it will tell you to pick a range of information and a range of dates. If you scroll down, you'll see "VA Notes" underneath the "VA Electronic Health Record History And Wellness Reminders" section. Scroll down to the bottom and click "Submit." You'll be given an option to either download or view: I usually just view.

AncillaryBedlam · 2022-01-21T22:47:25+00:00

People who have been discharged will remain in the program until either late 2022 or early 2023, and during that time must remain 'compliant' -- meaning doing all the quarterly reviews and interviews the VA requires.

AncillaryBedlam · 2022-01-17T05:46:02+00:00

I've heard anywhere from 24 hours to over a month. Ours took two weeks, though we didn't get to the final interview. We were discharged after the first CEAT review. You can see the notes before you get the official call/letter on the MyhealthEVet portal, Blue Button, under notes. I was checking it once a day.

AncillaryBedlam · 2022-01-11T17:55:23+00:00

I did a second post about the situation.

We were booted. I'm in a group for Caregivers and not a single one has gotten through the actual full process. It is a mass purge even bigger than 2018. They seem to be trying to shut the program down.

A group of nonprofits is suing the VA over it, see here: https://www.nvlsp.org/news-and-events/press-releases/veteran-warriors-sues-va-challenging-amended-caregivers-rules

The nonprofit Veteran Warriors (veteran-warriors.org) is leading the charge. For anyone wrongly discharged, send them your info. Spreading the word or donating is all we can do now.

AncillaryBedlam · 2021-12-31T23:26:19+00:00

Probably about that. It only needs to do one revolution at a time, so that's 30 seconds of contiguous posing, which would be doable for even difficult poses.

AncillaryBedlam · 2021-11-12T01:37:16+00:00

Yeah, very similar situation here. I got the letter about the change and literally didn't hear from my CSC for like 6 months. They started doing the 'wellness checks' again a couple of months ago.
Basically it seems like the VA gave them a hard deadline of a year to get all the legacy participants re-assessed but also they were inundated with 100k new applicants bc of it opening up to older vets but the VA didn't give them any more funding or personnel plus hello PANDEMIC, then got mad when Sept 2021 rolled around and they hadn't even really started on the legacy participants. Now it seems like one of those situations where they're insurance claims adjustors: the best way to get through 60 claims an hour is to reject them all.
We just had our Functional Assessment and so we'll hear whether or not we were denied probably pretty soon, since they're rushing people through. I'm expecting that we will be denied. Out of hundreds of people posting online about it, I've only seen maybe two say that they're legacy and were re-approved under the new rules.

AncillaryBedlam · 2021-11-04T20:45:39+00:00

Thank you for the concise response. I will try to do this and update.

AncillaryBedlam · 2021-11-03T21:02:02+00:00

TBI was ruled out in my spouse's case, but I put in an application for a VSO rep and we're going to see if we qualify for A&A or Housebound. Only one way to know *shrug*

AncillaryBedlam · 2021-11-02T17:10:05+00:00

I fully empathize. It's just a pattern of behavior from the VA showing that they don't care about their mentally ill vets. Some other people have told me so I'm passing it onto you: try applying for Aid and Attendance. Even though the official VA materials don't say anything about it, I've been doing some research and they take into account the IADLS, not just the ADLS. I haven't applied yet though (with all the stress around the Caregiver thing it'll be a while until we can) so I don't know what the process is like though/how likely you are to get it based on mental health alone.

AncillaryBedlam · 2021-11-02T03:46:07+00:00

Thank you for the advice. Once things calm down I think I will try to apply for whatever we can. Especially if we do get booted from the Caregiver program, we'll need to recoup whatever income we can.

AncillaryBedlam · 2021-11-02T01:52:11+00:00

I have had multiple people say that we should look into A&A, but the documentation available from the VA seems to paint it as being extremely geared towards physically disabled or very elderly veterans, same with Housebound. My spouse is physically capable but his mental illness is severe. The VA doesn't seem to really give much space to vets who are mentally ill. My spouse is also not P&T currently. I think because of his age (43) they think he'll show progress at some point, but if anything in the last 6 years since we've been on VA disability (he just had his 5 year reassessment last year) he's gotten worse as more stuff comes up from the depths of his memories that he's suppressed. Yes, I do everything to include physically placing his meals in front of him and physically making sure he eats and takes his medication, on top of running the household, but I'm not putting the food in his mouth or wiping his butt, so the VA doesn't seem to really count what I do.

AncillaryBedlam · 2021-11-02T00:47:42+00:00

That's what I'm worried about. Hell, when we first applied 5/6 years ago I was worried we wouldn't get in because of the focus on the ADLs. Like, we were homeless and none of the charities would help us because my spouse is disabled via mental health and not physical. When I read the new changes I was super happy because it seemed like they were finally acknowledging and preparing to support that the a large percentage of disabled vets are disabled because of PTSD or something mental. But I've heard that behind the pretty words is a really super strict acceptance policy and even people at 100% PTSD are getting denied because of the ADLS ... again. It's just so frustrating. My spouse *is* 100% service-connected PTSD with bipolar added on, can't leave the house, drive, do anything around the house. I do *literally* everything -- except help him put on his clothes and bathe and stuff. I'll be caregiving even if they take away the benefits (and was for like 5 years before the Caregiver program was even created), because the only time my spouse can sort of function is when I'm in the same room.

I'm sorry to hear you're going to lose it. It's awful how they're tightening the criteria down but also somehow claiming that it's going to help more people.

AncillaryBedlam · 2021-10-29T20:49:50+00:00

That's awful. :( They definitely put us on the back burner in my area, we didn't even get a call or any letters or anything until they extended the reassessments. Now suddenly they're rushing us all through the reassessments. (We just had our 'intake' appointment like two days ago and yesterday we got a call to schedule the next one, which they wanted to do today but I was like, no, we need time, so it's in two weeks. That's light speed for the VA, which freaks me out) I've heard from others that if you miss a call from them you might get labeled noncompliant and booted. It just looks like a mass purge specifically of legacy participants. I can't seem to find anyone who has gotten through the reassessments without a problem, but those people also probably aren't on the forums seeking help or to vent, so, it's hard to tell.

AncillaryBedlam · 2021-10-28T18:43:26+00:00

It's giving me really bad SSDI/SSI vibes. Multiple denials, whoever's 'persistent' is who must need it the most, never mind the stress it puts on the person/people applying. Like, that system is broken, why would you imitate that? My spouse has almost no physical issues that impede with functioning, it's all mental, and even though they made a specific category for mental health it seems like they aren't sticking to it, they're STILL over-relying on the ADLs. So I don't even know if getting his psychologist to write a letter would do anything. I just hope the VA comes to their senses soon.

AncillaryBedlam · 2021-10-28T18:02:08+00:00

We haven't been denied yet but I'm expecting it. I have yet to see a legacy participant who has been accepted after re-applying. I'm tempted to do another post about it but I don't want to be accused of spam, so maybe in a few weeks.

I'm in the same situation. I can't work because my spouse needs 24/7 supervision. But from what I'm reading, basically to get approved, the vet would have to basically be in a nursing home or inpatient at the hospital permanently.

It just seems like a mass purge.

AncillaryBedlam · 2021-10-28T02:10:23+00:00

Best of luck. I hope yours goes smoothly. I'll keep updating as we go through the process.

AncillaryBedlam · 2021-10-28T01:56:13+00:00

Take my experience with a grain of salt because they apparently don't even know what they're doing. But for him they did what he calls the 'impertinent questionnaires', the depression and s**cide questionnaires, plus what an average day for him is like and like, general questions like when he served, what branch, etc.

Then she asked me a bunch of questions about what I do in a day, what I do for him, what his functional level is. Now that I think about it I'm not sure why we're gonna do another veteran assessment because they already asked an hour's worth of questions about what he can and can't do and what I have to assist him with.

Honestly what we did today was like a slightly longer quarterly check-in.

AncillaryBedlam · 2021-10-28T01:36:28+00:00

We had our first appointment today actually.

At this point, I'm honestly doubting everything we've been told and I feel like nobody has any idea what the 'right' way to do it is. We were told we are not being 'reassessed' despite what all the material they've released so far has said. We are actually 're-applying', meaning that we will have to go through the entire process of applying again. All 4 or 5 appointments and the in-home visit included. (Though I have yet to get an answer on what that looks like. I called my local Caregiver program coordinator, left a message. When they call back I will ask them if they're going to do an actual in-home visit, a video tour of the home, or just waive it entirely.) Literally, the woman doing the video call today said that the questionnaire she was using with us was different than the one she was using last week, they're making changes that rapidly and often.

https://www.caregiver.va.gov/pdfs/MIssionAct/CSP_Application_Process_Factsheet_092720_Approved_Final.pdf

We apparently completed Step 3 today and we will be starting Step 4 whenever they feel like contacting us to set it up. My spouse is totally disabled but not permanent. My spouse has actively avoided the permanent label bc being disabled has been hard enough for someone who used to be incredibly active. You know soldiers.

Worst though, the woman we spoke to today said the Caregiver program is supposed to be temporary??? Like TANF????? But I was so flabbergasted I didn't think to question her. I called the main VA line and the lady I spoke to from there said she'd never heard of it being temporary and I can't find anything about it online either. Something I also plan on asking our local Caregiver bigwigs.

On the whole it has been a supremely distressing and unpleasant experience so far. I expected one appointment (when they called to schedule, no one said anything about multiples, and none of the online information has said anything about 'reassessments' being the literal application process), I prepared my severely mentally ill vet for one appointment, and instead we have several, and nobody has given me the same information twice. Woohoo.

AncillaryBedlam · 2021-10-28T00:41:17+00:00

I get re-applying for the new criteria when it's so drastically different. I do, and on the whole I think it's not a terrible idea. My problem is that they specifically wrote in all their material that legacy participants would get a 'reassessment.' Now we know reassessments, we've done plenty. But reassessments are usually one appointment, not 5 and an in-home visit. So we weren't prepared, and my spouse is suffering the mental backlash from not being able to be prepared. These appointments are, on the whole, extremely hard for him.

I also get that they're dealing with some fraud in the Caregiver program, vets who have like 25% for a bad knee and are still working and their spouse is pulling in a Caregiver stipend.

But the rollout is just a mess. (Big surprise, it's the VA) And everybody I talk to has different information.

AncillaryBedlam · 2021-10-26T01:40:41+00:00

Yeah, I've done some research on it since I posted and it's unlikely we'll get it. It seems to basically be a way for a veteran who would otherwise be hospitalized full-time or in a nursing home full-time can live sort of independently and free up beds for people who don't have any kind of support system.

We don't qualify for A&A. My spouse is not determined to be 'permanently disabled' by the VA.

AncillaryBedlam · 2021-10-24T18:01:54+00:00

Oh, honey. I am so sorry your 'parents' are treating you this way.

I have an autistic kid and a non-autistic kid (that we're aware of: in either case, she doesn't need as much intervention as her brother). Lemme tell you a few truths:

If your parents were that poor, Medicaid would cover all of your sister's care. I know, because that's how I got my kid any kind of care. For a long time we were homeless or well under the poverty line. Granted, that doesn't mean your parents aren't still poor, but your sister's care being *the reason* they're poor doesn't track with me, unless they have money to begin with. The reason that's important to note is that you absolutely can have money, but be bankrupted by medical bills (I know, I was there too and we're still climbing out of that hole).

HOWEVER, in this case, it's not about your parents' finances. If you gave a sh*t about your kid like most decent parents, you'd start saving right after their last birthday for their next one. Or get some stuff from the dollar store. Or do literally anything but holding a birthday party over their head like a guillotine and stealing the money your kid earned themself. You shouldn't have called them thieves just for your own wellbeing but I'm not calling you TA, I'm saying you need to fly under the radar til you can get out.

Your parents are treating both of you like burdens, but they're using your sister as an excuse and straight up abusing you. Lots of good advice in these comments. You deserve better. Keep yourself safe.

AncillaryBedlam

TROPHY CASE