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Catastrophically disabled VA
shardy
Posted: Saturday, January 15, 2022 2:39 PM
Joined: 12/14/2011
Posts: 445


I've read back through quite a few posts on this here. They seem to say different things. Which I'm beginning to think has to do with the time they were posted. I'm sure things have changed over the years.

I have searched and searched online but was wondering if there is anyone here who has a LO who receives benefits through this designation that can tell me exactly what the benefits are.

To be more clear, I know the VA offers 30 days respite per year ( I have a carer coming next week for the 1st time) but in reading posts here one of them mentioned with this designation she received day care for three days a week in addition to respite care..  The VA here like most was totally unfamiliar with " catastrophically disabled " . I am supposed to hard from them next week.

Thanks in advance

Shardy


loveskitties
Posted: Saturday, January 15, 2022 3:13 PM
Joined: 6/14/2021
Posts: 504


There is a health benefits hotline on the Veterans Health Care page.

It is 1-877-222-VETS (8387).


M1
Posted: Sunday, January 16, 2022 5:36 AM
Joined: 8/22/2020
Posts: 2307


Shardy my experience with the VA is professional not personal, but I believe the disability designations relate to what happened to him in the service, not his current condition, do they not? So unless his catastrophic disability was caused by his military service, I doubt they would offer coverage.
ButterflyWings
Posted: Sunday, January 16, 2022 6:27 AM
Joined: 12/11/2018
Posts: 830


I will be keeping an eye on this thread. It was my understanding that the catastrophic designation did not have to be service-related. Could be wrong. We will find out soon. I am applying for DH, finally. 

I too got confused amid mixed messages. As you say, some things may have changed periodically. I was about to apply, then covid — and some exams and appointments to help complete docs got postponed. I feel like we have lost valuable time and money (much needed support this Vietnam vet is eligible for, but I just didn’t know). Makes me feel sad and like I dropped the ball. Sigh. I am trying not to stress over that and just start from today.

Good luck to you.

This link does not exactly say. https://www.va.gov/healthbenefits/assets/documents/publications/IB-10-435_Catastrophically_Disabled_Veterans.pdf

 


June45
Posted: Sunday, January 16, 2022 7:44 AM
Joined: 10/16/2020
Posts: 350


https://www.alzconnected.org/discussion.aspx?g=posts&t=2147536925  


Rick4407
Posted: Sunday, January 16, 2022 7:53 AM
Joined: 4/4/2018
Posts: 315


If he is an honorably discharged veteran he is entitled to some level of healthcare.  You can go to VA.gov, their overall website and start reading.  His form DD214 is the key to finding his benefits.  

If you do not have his form DD214 you can request one from the VA.  It will outline his service and type of discharge.  

Doing the actual claim submission can be done by you on the veteran's behalf, or a VSO, or many law firms have VA specialists who can help.   What is called a VSO will assist you at no cost once you contact them.  Many states have VSO's, some veterans organizations VFW, etc have VSO's and the VA itself employs VSO's.    (VSO is Veteran Service Organization or specifically a Veteran Service Officer.)

His condition does not have to be service related to get healthcare at some level.  To be entitled to a VA pension his condition will need to be service related.   

That's the basics.  Look for a VSO and they will do the heavy lifting.   Rick


M1
Posted: Sunday, January 16, 2022 10:43 AM
Joined: 8/22/2020
Posts: 2307


FWIW found this online:  doesn't sound service-related to me

If a veteran meets one of the following permanent conditions because of life events unrelated to military service, they will likely qualify for the catastrophic disability designation:

1. Quadriplegia and quadriparesis

2. Paraplegia

3.  Legal blindness, defined as visual impairment of 20/200 or less visual acuity in the better seeing eye with corrective lenses, or a visual field restriction of 20 degrees or less in the better seeing eye with corrective lenses

4.  Persistent vegetative state

5.  Amputation

6.  Dependent in three or more activities of daily living

7.  Mental health behavior that is considerably influenced by delusions or hallucinations, or serious impairment in communication or judgement or inability to function in almost all social areas


ButterflyWings
Posted: Sunday, January 16, 2022 6:50 PM
Joined: 12/11/2018
Posts: 830


Thanks for this topic shardy! Also to all who added clarifying info and links. Especially June for the early-to-mid 2018 thread. That was pre-diagnosis for us but boy do I wish I had seen it a couple of years ago.

Anyway, I will be on top of it now. Still a little confusing though— I downloaded the correct form for the catastrophic designation from that prior thread, (thanks to JJaz) and will have the hospice NP or MD complete it this week. 

Here it is: VHA-10-0383

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&ved=0ahUKEwiohJ-e-bDbAhUJP6wKHfvjDVcQFghLMAM&url=http%3A%2F%2Fhelpdesk.vetsfirst.org%2Findex.php%3Fpg%3Dfile%26from%3D2%26id%3D562&usg=AOvVaw3zbE9N9wfYV7QQdf58yVqg

DH clearly qualifies based on the ADL criteria. He needs assistance with all but 2 listed in the KATZ scale referenced in the VA form: https://www.alz.org/careplanning/downloads/katz-adl.pdf  But the explanation  on the application (#2-1., is still confusing to me since he is at a 2 based on the Katz scale, but the VA form seems to be requiring a 3? (Which is higher or more independent? & that makes no sense).

They say you need a PhD to figure this stuff out but that’s not helping me at all . I will take a Lady Texan approach and be grateful that you all have started me off well on one of my unspoken New Years resolutions!!! Thank you! (Your resolutions thread got me thinking M1, but I had not pulled it together enough to post. This was in the top 3 though!)


shardy
Posted: Sunday, January 16, 2022 7:25 PM
Joined: 12/14/2011
Posts: 445


Thanks all for the links and info. Jim is 0% service related.. He is a veteran who is disabled but not considered a disabled veteran..  It's all in the wording.

I started taking him to the VA in 2013, but we had applied and been accepted in I think the late 80s. (Mom was a NP  there and a big change was coming to vets accepted after a certain date so she insisted he apply before the deadline and he did.. We just never used it till the dementia diagnosis)

One of the qualifications for catastrophic disability can be the inability to be left alone without risking harm to self or others.. The SW at the VA informed me over two years ago that leaving him home alone would be considered abuse so I am hoping he will qualify on that alone. I am also hoping his Dr will figure out how to sign off on this with no additional testing.

Sadly neither his doctor or social worker have heard of this designation. They are looking into it and I am supposed to hear from them this week.

I was told it would pay for his copays and  prescriptions. He takes 8 each day so that would be great. For the most part the big thing I am hoping for is daycare. 

 We are just beginning daycare and the 30 days respite the VA provides I'm sure will go fast. After that the daycare charges $34 an hour or $272 for a 8 hour day to come to your home, so it adds up 

I will let you know what I hear.

 


Joydean
Posted: Sunday, January 16, 2022 8:37 PM
Joined: 10/10/2021
Posts: 480


Is his PCP through the VA? Psychiatrist at VA? If so you should not be paying very much for his meds. My husband is also Vietnam vet, both his doctors are VA, and all last year we didn’t get a single bill which kinda scared me. All his meds are covered. They have made a lot of changes over the past two years.  We have to drive a hour and half, sometimes depending on traffic two hours to get to his doctors which is hard sometimes, but financially it’s worth it.  Most of the visits now are video, that part is nice. We still go to see the psychiatrist in person every other visit because dr wants to observe DH better.
ButterflyWings
Posted: Sunday, January 16, 2022 8:50 PM
Joined: 12/11/2018
Posts: 830


I will keep you posted on our application process as well. 

Here is the link to the Global Assessment Functioning tool which is the option for qualifying based on criterion #2-4. A dementia diagnosis pretty much places someone at 30 or below which is the requirement (judgment and permanent cognitive issues- like you said, unsafe to be left alone, etc). DH definitely qualifies and if your DH has ever been treated for hallucinations or delusions which come with the territory, I’d bet the prescribing doc can use that knowledge to sign the assessment form without any new testing or verification procedures, etc. I will post the other 2 tools listed as options, as well. Maybe you can give them to his NP and doc to help them along with the research. That’s what I’m going to do asap.

 https://www.webmd.com/mental-health/gaf-scale-facts

I agree with you, I wish more people in the dementia professional medical and social services or social work ranks knew about these resources. His Dr said he had to retire immediately upon diagnosis. When I tell you we have been struggling to make ends meet, and did not know about his VA benefits, I could cry that they won’t provide any retroactive reimbursement, just 2-3 years would help so much.  

But (thank you for your service), it’s like so many best kept secrets that feel like they are “for them to know and us to find out”. If we are all really, really lucky it will go through at some point at least, and we will get some relief. Yes, co-pays and also I was told there is caregiver pay for spouses if housebound which we are. We will see. (Another set of forms ) Good luck to you. At least we are on the right track now it seems. 


Lorita
Posted: Sunday, January 16, 2022 9:08 PM
Joined: 12/18/2011
Posts: 13997


Shardy, Charles was 100% SC and he was eligible for respite care and also for a certain number of hours of health care at home.  Sadly, before we were able to take much advantage of this he passed away.  I retired from the VA 27 years ago (hard to believe it was that long ago) and things have changed so much since then.  Best to rely on what the social worker tells you - might also get in touch with a service organization.  We did most of applying for things through the Oklahoma Dept. of Veterans Affairs - I'm sure your State has the same service organization.  Good luck to you.
ButterflyWings
Posted: Sunday, January 16, 2022 9:13 PM
Joined: 12/11/2018
Posts: 830


Here is the section of the form that I’m pulling the tools for. Only one qualifying assessment scale is needed to qualify. 

 2. THE VETERAN IS CATASTROPHICALLY DISABLED IF THE VETERAN PERMANENTLY MEETS ONE OF THE CONDITIONS SPECIFIED IN THE FOLLOWING SECTION: (Check the appropriate item for which the veteran qualifies, and attach the completed assessment tool.)

[] 1. DEPENDENT IN THREE OR MORE ACTIVITIES OF DAILY LIVING (EATING, DRESSING, BATHING, TOILETING, TRANSFERRING, INCONTINENCE OF BOWEL AND/OR BLADDER), WITH AT LEAST THREE OF THE DEPENDENCIES BEING PERMANENT WITH A SCORE OF 1, USING THE KATZ SCALE.

[] 2. A SCORE OF 10 OR LOWER USING THE FOLSTEIN MINI-MENTAL STATE EXAMINATION.

[] 3. A SCORE OF 2 OR LOWER ON AT LEAST 4 OF THE 13 MOTOR ITEMS USING THE FUNCTIONAL INDEPENDENCE MEASURE (FIM).

[] 4. A SCORE OF 30 OR LOWER USING THE GLOBAL ASSESSMENT OF FUNCTIONING (GAF).

PATIENT NAME (Last, First and Middle)

VA FORM 10-0383 Page 1 of 2

*** Note, looks like my DH is below 10 on this scale. Poor guy. 


ButterflyWings
Posted: Sunday, January 16, 2022 9:32 PM
Joined: 12/11/2018
Posts: 830


Almost done. My apologies for the multiple posts. Thought it would be the best way to organize the different tools for each criterion. 

So, you learn something new everyday. *me anyway: The Folstein (qualifying option #2-2) is the same as the MMSE. The VA form says Catastrophic Disability status requires a score of 10 if you chose this tool. There is also an online version of the MMSE at this link, FYI. 

The  Folstein mini-mental state exam is the MMSE 


ButterflyWings
Posted: Sunday, January 16, 2022 10:04 PM
Joined: 12/11/2018
Posts: 830


 OK- here is the last assessment tool option. Took me a bit to figure it out but #2-3 on the VA form 10-0383 (qualifying conditions under section 2) requires a score of 2 or lower on at least 4 of the first 13 ADLs on this tool/scale. 

That’s the motor skills section and I see eating, grooming, bathing, toileting, dressing, incontinence, etc. 

Here is the Functional Independence Measure (FIM) pdf. The scoring scale is at the end. DH needs significant assistance with enough of these to qualify. Some 2’s (he helps a little 25%?, I do the rest e.g. with eating, dressing and toileting); some other motor skills ADLs listed, he is at a 1 or 0 meaning needs help 100%- totally dependent.

 https://www.aast.org/Assets/861012da-9cc3-46d4-b5cf-a5284f97f8dc/637261796786700000/ipv-elderly-fim-data-sheet-pdf

I hope this is helpful for others. I am very happy to be making progress on this quest. It was a great jumpstart. Much appreciation for the teamwork and encouragement. Have a good week, all.


Tfreedz
Posted: Sunday, January 16, 2022 10:09 PM
Joined: 11/26/2021
Posts: 138


Thanks for all of the info and links you’ve provided. When my mom was diagnosed 5 months ago, I called many places- Placeformom, office of the aging, CELA,and care managers, each one asked me if my mom or her spouse had ever served in the military because there are benefits. I’m so sorry no one asked you this when you started your journey but glad you found out now. 

My parents never served but I did, so I asked some questions. I was told both myself and husband who never served would be eligible for long term placement with VA benefits in the future. Not the entire cost but a few thousand a month. This was such a relief to hear since we are stressed trying to find affordable options for my mom, that hopefully we won’t put that burden on our children. So my point is...find out what benefits besides caregiving will be available to you as well as him.


ButterflyWings
Posted: Sunday, January 16, 2022 11:09 PM
Joined: 12/11/2018
Posts: 830


Tfreedz- thank you for that great tip. Yes we need to always ask what caregiver’s resources are available since we are all package deals! I will inquire more with the VA caregivers support social work hotline this week. 

On diagnosis, I was guided to this forum right away (kudos to DH’s neuropsych) and here is where I was urged to meet with a CELA and read as much as possible. It is priceless for sure. And this forum is where I did hear about possible veteran’s benefits before today, but there were different ideas about eligibility based on income, on not being a service connected disability, not being early onset (my DH was diagnosed in his 70s), not being VA connected for his healthcare, not having declined enough yet (but it turned out he was probably overcompensating for a long time and was further along than they initially thought plus he’s been a wandering risk since day 1 and requires 24/7 line of sight supervision). 

I really did not know what to ask at that time, or this forum community would have come through. It always does! I wish the broader healthcare and dementia care systems had at least general knowledge or reliable FAQs and emphasize getting all VA information and options It would have helped us SO much. There were so many other urgent priorities (major safety issues, getting him somewhat stabilized, retired under duress, car disappeared after repeated close calls — I was on overload! Could not have sat for hours to search and pull up links and review them etc.) 

I met with one CELA who was more Medicaid focused than VA knowledgeable and I started the Aid and Attendance app myself early 2020–, it did not go through—(tech issue I think) then COVID hit and well, you know. 2021 has been all about trying to keep our heads above water and keep up with DH’s steady progression. 

So, at least now there is a new form, new option, I see the criteria and have a team that knows his status very well. I think they can help get the ball rolling and once we shift at least some of his healthcare or other services to the VA he will be in the system and that might help, 

Stay tuned. Take good care of yourself and thanks again.


Joydean
Posted: Monday, January 17, 2022 9:37 PM
Joined: 10/10/2021
Posts: 480


Shardy and Butterfly Wings, thank you for sharing all this information!
Gig Harbor
Posted: Monday, January 17, 2022 10:20 PM
Joined: 3/10/2016
Posts: 973


I googled VA a catastrophic disability and found quite a bit of information. If you request an evaluation they have to do it within 30 days of the request. The number associated with it is IB 10-435. If it is not service related they are considered Priority Group 4. Hope this helps.
Caring4two
Posted: Tuesday, January 18, 2022 9:47 PM
Joined: 7/6/2014
Posts: 677


Yes, surprising isn’t it that Va’s don’t know about this designation. I’ll try to keep it simple. You can find this form, VA form 10-0383, online and print it off. That’s step one. Then it has to be filled out by a VA doctor so make an appointment with VA doc near you. Request an evaluation for catastrophic disability determination. If you have records from non VA Dr, get those also. A documented diagnosis of Alzheimer’s is key. Also the MMSE score must be 10 or lower. The VA Dr should take the paperwork from there. What you ultimately want is to get that “priority group 4” designation. Then income is not an issue for future services. 

Regarding what benefits are available, that depends. I was trying to get daycare covered for my husband but his daycare would not accept a VA contract so I ended up private paying. Same with home care and respite care providers. They must agree to enter into a contract with the VA to be paid. The VA has to vet (approve) them. If you live close to a good VA system, that will make all this more doable. If you live far away from a VA center (like we did), then it becomes more difficult. 

I was also looking at the possibility of placement in a VA facility and needed that priority group 4 designation to do that but my husband died before that was needed. None of this happens overnight. So get started on it before you need it.I have found that what the VA says in their literature and how you actually access the services are two different things. Also, there should be a social worker at the VA that should be able to help you navigate the system.

 Hope this helps in some way.


ButterflyWings
Posted: Wednesday, January 19, 2022 5:13 AM
Joined: 12/11/2018
Posts: 830


Thanks Caring4Two-

Relinking the Catastrophic Disability Form if anyone needs it. I spoke with a VA social worker today via the caregivers support line and she said the same advice you gave, to use those exact words when scheduling the appointment. 

But she informed me our step one is getting DH switched from Medicare & currently docs to VA for healthcare, before any of that can happen. So I also was directed to register him with VA health system via phone at the main number, but the computer system was down (?!) so they could not. Will try again.

I had previously started applying for some of the pension & benefits he is eligible for that go through a separate system (VA benefits vs VA health)—and am still trying to do that, after 2020 COVID interrupted everything & I ran into walls with that plus AD escalation at home.  Regretting that I was never advised to switch him to VA for health care, as it’s likely we already would have gotten all his benefits started faster that way too. Oh well. 2022 is the year for me to persist until I sort this out. 

*One important note. The MMSE is not the only assessment that can be used to qualify a PWD LO for this Cat. Dis status, so my DH’s prior med records verifying housebound status and 24/7  supervision needs plus significant help with ADLs will hopefully suffice. And it says the VA doc could determine his eligibility based on reviewing the records, maybe not require an exam. That would be ideal since I can’t get DH to leave the house. *But as Caring said, the written process is not always how it works! Learning curve for this veterans spouse.

FWIW, the 10-0383 (qualifying category #2) says the Katz, FIM, or GAF scales could also be used, or the MMSE. I linked each of those earlier in this thread. Thanks to everyone who has been through this process for sharing your knowledge and experience. That is so helpful. It’s so complicated it can make one want to give up. But my DH deserves and needs to receive what he’s eligible for. So I’m on a mission now.


M1
Posted: Wednesday, January 19, 2022 7:15 AM
Joined: 8/22/2020
Posts: 2307


BW and shardy, I got curious this morning and googled the VA priority groups--I think you said that catastrophically disabled are priority group 4---I can't copy the entire thing I found, but if you google it you'll find it.  Basically there are eight priority groups, so this falls in the middle.
Rennbird
Posted: Wednesday, January 19, 2022 9:35 AM
Joined: 2/23/2017
Posts: 81


Between dealing with my husband’s AD and the VA, I was never more confused in my life.  I felt as if I was stumbling through a fog.  My husband was a career Naval Officer.  He served as Officer in Charge of a Swift Boat in Vietnam 1968-1969.  He ended up with Alzheimer’s, Diabetes2 and peripheral neuropathy.  The last two were Agent Orange related.  AD was not.  The rudest awakening of all, was when I tried to get him into an really great VA facility in Richmond.  Because my husband was a fall risk, he was rejected.  They agreed to accept him if I paid for a private caregiver.  This would have been an exorbitant cost and defeat the purpose of placing him in a VA facility.  I live in Northern Virginia and ended up placing him in a Veterans contracted facility in Bethesda, MD.  He died three months later.  During the day,  the patients were kept in a room with no windows and CNN on the television.  The entire experience was astounding. The cost of war is paid for by the participants and their family many times over.  My husband was buried with full military honors at Arlington just three days before the world closed down in March 2020.  I consider myself fortunate.