Firstly, the two caregivers where Dado is, do a great job and none of the problems come from them.
When he was first getting admitted, back in that time when I was so sick and he was still in the hospital, the Case worker for the Home had me meet up with her and sign all the papers. One of them was, a form for Social Security that would pay the SSI, NOT OUR REGULAR SS retirement check, directly to the Caregivers to cover his "room and board", which is $420.00., and billed separately from the bill they submit to Medicaid for his main care. It was all confusing but I believed what she said, that they would get that $420.00 amount sent to them and I would not have to pay it.
Well, this case worker is really bad and she did not do her homework. After months of waiting and me having to pay that bill, (despite being on Spousal Impovershment for Medicaid, which means I am supposed to be able to keep all of our meager income), we found out that because he is not 65 yet, he DOES NOT EVEN QUALIFY FOR SSI!! You think they would have checked this, AND she did not even know we received regular SS retirement checks.
So that means ok I have to pay the $420.00 a month. NOW, I WENT ON LINE LAST NIGHT TO CHECK OUR BANK ACCOUNT, and there was NO DEPOSIT of his Social Security retirement which comes every second Wednesday. I have bills sent out and they will be bouncing. I was SO scared oh my God now we have NO income, they screwed us up and we have nothing.
Even though it was evening I managed to get a hold of that horrid caseworker, she called the caregivers at the home, and our income had been DEPOSITED TO THEIR ACCOUNT!! And, she tried to sluff if off on me, saying well you signed the form for Representitive Payee, which I had been told was just for the SSI, (supplemental social security income.)
This has been a nightmare. Today I have to go get the check , OUR MONEY<, from the caregivers , so I can drive the miles to the bank to deposit. Not to mention the bounced check fees.
I am really tempted to bringing him home in a month or two this is just all too much. Either that or place him in a "regular" nursing home, and start the whole nightmare over again. Honestly, with this , with stabbing in the back "friends", with the fear of losing any security, it is really hard to pull up the big girl panties. How I wish I could just see it for well that is life, and it will iron out.
I had really felt I am recovering and moving on in a positive direction, and then wham, more mix ups. I hope that if any of you is considering Foster Homes, heed what I have to say, especially if you are going the Medicaid route.
Coco.....OHHH MYYYY....how terrible. SS sucks. Is Dado getting SS disability? He should be and it is the same amount as if you were 65 and retired. You have to wait two years to get medicare or medicaid after you start getting payment for disability because you can't work. This is all so difficult for the average person to understand and many in SS don't understand either. If you call two people you will get two different answers. All I can say...is "This too shall pass"...but, mean while it is just one terrible headache for you.
I am confused about this phrase: "One of them was, a form for Social Security that would pay the SSI, NOT OUR REGULAR SS retirement check, "
I do not understand the difference between SSI and "regular SS retirement check". I assume that Dado is retired, so he would just get a social security check (let me know if I am wrong). The income is more than $420 so only $420 should go to the group home and the rest should go to your bank account. Is that correct? You can collect social security retirement starting with age 62.
Is there any way that you can have the income go to your bank account and you then pay the group home yourself. I realize this might be against the law but I am nor familiar with it. This is confusing.
Also talk with the bank officers and see if the bounced check fees can be waived.
Coco, there are 3 kinds of social security income - straight social security you receive at retirement age (65 or greater), social security disability income (ssdi) which is if you're under retirement age and you're totally disabled and cannot work and supplemental security income (SSI) which you're eligible for if you are disabled (you do NOT need to be 65) AND meet income/asset requirements to qualify. SSDI is based on the earnings paid into social security, SSI is not. You can collect both SSDI and SSI at the same time and it appears that that is the case for Dado. When he was apporoved for SSI he should have become eligible for Medicaid immediately. Then when he became eligible for SSDI he would become eligible for Medicare 24 months later. Once he is eligible for BOTH medicaid and medicare, medicare pays for his health care first, then medicaid. I know the medicaid is paying for his foster home services and not medicare.
It appears that the SSI income is offset by any ssdi benefits because a person cannot collect more than the ssi maximum amount. For example, the maxium ssi monthly payment is $546. If Dado is receiving a ssdi check for $350 a month, social security will deduct the $350 from the $546 ($546-$350 = $196) and the ssi payment will be $196. Perhaps if Dado's ssdi check is greater than the ssi maximum amount he doesn't qualify for a ssi payment?
The ssa.gov website is very informative in case you don't already know this (I assume you do but thought I'd share just in case).
I agree with paul, I would try to have the $$$ redirected into your own account and then pay the foster home if they allow that. Many places require the payments go directly to them. I am so very sorry you have to deal with this again. Can you complain about the caseworker to someone?
I wasn't aware of SSI. As for Representitive Payee, I am surprised that the group home was made it instead of you. Them being RP for the amount they are owed makes sense, but not the total amount since it is for both of you. But the SS Retirement, I am assuming, is just based on his work history so they lumped them together. If worse comes to worse can you arrange for the group home to transfer the amount above what they are owed to you as soon as the check comes in? But they really should not be RP for the entire amount.
You do NOT need this aggravation. The only person I got all the answers from was in the Department of Elderly Affairs. I mentioned in another thread how clear, concise, and helpful the woman was. Please try calling the Hawaii Department of Elderly Affairs, tell them the situation, and ask if someone can help you. I really feel for you because I know how stressful this all is. I'm going through it right now.
As I understand it, if he is already on Nursing Home Medicaid, you do NOT need to reapply. All you need to do is transfer him to a nursing home that has a Medicaid bed available.
Dado started collecting his retirement SS benefits at age 62, taking the lesser amount. One month after he started getting this, he was diagnosed with AD. We did not, apply for disability, now this is something perhaps should have been done, I will find out more tomorrow.
The case worker did not even know the difference between placing a married spouse, and a single one. She did not even check that he was under age 65, and that he collected "regular SS" already. So , when he was placed, she told me, well just sign over the benefits for SSDI, that they could collect that amount and NOT OUR income, I was very clear on that, but obviously she did not hear. This was supposed to cover the $420.00 a month "room and board" something obviously attached on over and above what Medicaid pays. I really do not get it.
THEN, about a month ago, I went to the local office, and the nice girl at SSecurity told me, well he does NOT EVEN qualify for SSDI! She warned me that this all looks shaky. Calls went back and forth between my VA social worker, and that dumb case worker, that it when she said oh I did not realize he is not 65.
She said, well, I would have to pay the $420.00 a month room and board until he turned 65, when they would reapply. What a crock!! My social worker told me we cannot break it up, why did they not know that!!???
So, I signed the Representative payee, for the caregiver nurse at the home, being TOLD , it would not affect my income. (This was a couple of months ago) I went in to my bank to check my acct. yesterday, and almost had a heart attack. I had sent out all bills timed for our deposit on the 10th, and there was NOTHING>>>!!! How could I not panic, there has been so many mess ups.
When I got a hold of the caseworker, and she called the caregivers, apparently SS had taken the Representive Payee to mean his RETIREMENT was to go them and , and sure $$@@&& enough, it did. They gave me a check today and I had to runto the bank to deposit it, and pay for one bounced check.
And I swear, that case manager told me, well you signed the Payee...and tried to dump the whole mess on me!!
On Monday, our VA social worker, (who is sooo angry about all this), and I are going to the Social Security office to straighten this out.
Right now I am so angry, and disgusted, and trying not to make rash decisions. I am giving it until the end of August, 4 and a half months, and if this is still a mess, I am going to bring him home. Of course, I still have to pay $420.00 a month, money I do not have. And, until it is fixed, I have to collect OUR money from them each month.
The whole issue with the $420.00 room, and board was not made clear to me, I think that is why they were the only ones to jump on placing Dado, it was a bit fishy.
The thing is , I really like the people who are taking care of him. What a bloody mess yeah? I was thinking of your struggles Joan, thinking I had gotten beyond that, and once again I have been getting anxious and stressed.
Coco: I am not sure about what I am going to tell you so maybe someone else can confirm or correct my info.
If Dado applied for SS at age 62 then you have to wait for 2 years before you get medicare. Unfortunately he got ill before the two year waiting period was up so they had no choice but to put you on the SSI so he could get medicaid.
Once again, I suggest you contact the VA about the exposure to Agent Orange...that is a fast tract situation. When you explain to them your situation you should have to wait but a couple of months and you will get payment from the time you applied. If you have already applied I suggest you contact your local VFW and get someone to help you with this and go to bat for you. You might want to do that even if you haven't applied yet. Also...the VA should have some place they contract with that will provide full coverage for him and you then would have his full SS for yourself to live on.
JudithKB*, yes as a matter of fact, I was just following up on the Agent Orange thing today. I received a letter confirming they believe his exposure to agent orange, and to contact a certain doctor. He only comes over from Honolulu now and then, I will call every day until I get him.
This is what it says...I had to type it all , of course it came on an official paper. I have blanked out some personal information . Please tell me if this is something like you received.
Dear Mr...
Thank you for reporting for you Agent Orange Examination, which was done by....., nurse practitioner, on 3/4/2013. You were exposed to Agent Orange when you served in the United States Army in Vietnam from 1968-1969. You were exposed to Agent Orange when you operated in defoliated areas, drank water from local streams, ate local foods with Vietnamese, and saw aircraft passing overhead spraying chemicals.
Past medical history is significant for Parkinson's, and Alzheimer's disease. You also have a history of headache, shortness of breath, chest pain, edema, urinary incontinence, joint pains, joint stiffness, joint swelling, weakness and incoordination of the limns, sensory change in the limb's, depression, anxiety, and memory change.
Physical examination revealed pulse 79, blood pressure 128/80. Remarkable physical findings are that you are not able to answer questions, unable to follow request to relax arms, dental caries, inability to walk due to generalized muscle weakness, cog wheeling, and bilateral enlarged knee joints.
Nurse....'s , diagnoses are 1)Parkinson's disease, 2)Alzheimer's disease
Please follow up with your personal physician and the Hilo VA Clinic to assist your medical concerns. It is suggested that you file a claim with the Veterans Benefit Administration for service connection for Parkinson's disease due to Agent Orange Exposure. Should you have any questions, I can be reached through the Hilo VA clinic at 111-1111.
Yes...that sounds very good. You need to call the VA and immediately get the forms to file the claim. In fact, don't wait for the forms...write a letter You might find the forms on the net. But, it is very important to actually get the claim filed because that is the date they will use to give you the back pay. He would probably get the 100% disabled pay and it is over $3,000 a month. Go to Military.Com site and look for the claim forms. I will look for you tomorrow if you can't find them. Or, just write a letter to the VA stating you are filing a claim on behalf of your husband for total disability due to his exposure to Agent Orange. Call the VA and they can give you the address...or call the VFW....they will help you. MAKE COPIES OF EVERYTHING YOU SEND THEM.
Coco...when you get the claim form....I'm sure you can find one on the net...just goggle VA claim form for disability Exposure to Agent Orange...send a copy of that letter and also write you own letter stating the financial hardship you are having and request that they fast tract your claim.
Thanks so much Judith I am researching. And...if we do get compensation, it is likely his Medicaid will be cut off. However, would his VA medical cover his nursing care? I believe the nurse told me that he should get in to Group one, he is in Group 5 now, which is limited.
Judith, I found site called Agent Orange Fast Track claims , it is a VA site. I have printed up the application, and there is a fax number I think I will just fax it tomorrow. Oh God wouldn't it be amazing if we got help? I do not care if I lose Medicaid if we had more income, and his medical got moved up, it would all be worth it.
The VA compensation for the monthly payments and the medical care does not affect medicare or medicaid and the money is tax free. The VA has something called Aid & Attendance or something like that for people without a lot of income and they also provide assistance to the person...I don't know much about that one, but Charolett (sp) knows how that works. Also, the VA will provide you with assistance in the care for Dado. They contract with places that provide assistance....Jim got something like 4 hours every day and I could have gotten more if need be. I sure hope you can get the 100% and I do think you will. When Dado passes you will get something like $1,200 for yourself. It has really helped me out a lot.
JudithKB*, I just faxed all the forms, the letter from the doctor, his DD214, and a cover letter!!
I was going to talk to our Social Worker first, and I thought, never mind. The nurse that did the assessment seemed to try to dissuade me as she thought it would affect his Medicaid for nursing home,,,,but, I am truly fed up with that mess anyway. I may bring him home if this all works out. Also, I believe he will still qualify for the Veterans Home in Hilo if I need to do that.
I am not going to get my hopes up, and what will be will be. But at least I have submitted it. Thank you so much for your encouragement. I will keep you posted.
In the meantime, now, because of all this Social Security mess, I have to make yet another 180 mile round trip to town to re do all papers and try to get my income back asap...if I take Dado out of there I will be making a formal complaint about this Case Manager.
Coco, damn! What a mess. Sorry you are having to deal with all this extra stress. I hope the VA works out for you and that you are able to get the SS mess straightened out. (Hugs))
Coco, if Dado cannot collect both SSDI and SSI then he is probably better on SSI. With SSDI there is a two year wait until you can join Medicare. SSDI would be based on Dado starting to collect SS Retirement at age 65, so that would be more than his current SS Retirement but I assume no more than SS Retirement + SSI.
What I find frustrating, in general, is how many benefits and support (I'm mostly thinking local, not federal) are limited to people 62 or older and do not cover people with disabilities. When we first got the FTD dx I called around, but since L is in her 50s we couldn't find any social services. And now that I am looking into ALFs many of them will not accept anyone under 62 (and many will not deal with someone with her dx).
paul, hb has the same dx as L and was dx'd at 58. No social services until 62 and only 1 ALF would take him at 58...all others said 65 was minimum age. I think his aggressive behavior (documented resulting in 2 involuntary psych hospital stays) was the real reason they didn't want him but were able to use his age as the excuse.
As it was explained to me SSDI is based on amount of money earned in qualifying quarters and is the same as what the worker would have received at 65. If a person is disabled and there is no work history for their 50's up to 65 their SSDI payment remains what it was. The surviving spouse gets nothing until he/she is 60 or 62. Medicare is effective after two years since date of disability, not two years since the SSDI payments started.
I was also told about SSA. It is an income but not asset based assistance program where the person receiving it receives a monthly payment and is also eligible for home assistance programs, but I don't know if it assists in ALF or NH. I had not heard of SSI until reading this thread.
You can also have the VA categorize Dado as "catastrophically disabled". The don't real advertise it (I just happened to see it in the yearly booklet the VA sent out), but my husbands primary care physician did the paperwork with my VA social worker and he was approved almost immediately. It automatically moves them up to a Priority Category 4 unless they are eligible for a higher rating. I have no copays now because of this category. He was in category 5 before that. His PCP hadn't really heard of it either, but the social worker knew what needed to be filed and with whom.
Just to clarify an earlier statement: when taking SS at 62 you still do not become eligible for Medicare until you are 65. SSDI is the one where there is the 2 years wait for Medicare. My husband took early retirement and then within a couple months was approved for SSDI so his check jumped up to what it would have been if he had waited until 66.
Coco - if he gets 100% disability from the VA, his care should be covered 100%. My understanding is anything over 50% and the spouse becomes eligible for VA medical also.
Sure hope you get back that RP sooner rather than later. I would put making a complaint about that lady who 'tricked' you into doing it on the top of the list - will be a good outlet for all the frustration you have.
Thanks for that Charlotte! Wow, it would be great to get covered by his medical. I am ON IT! First set of papers filed.
And now today I am on my way to town, once again, to the Social Security office. You know I have gone this will be the third time due to mess ups with the Case Manager, they ought to pay for my gas for the 160 mile round trip. My social worker from the VA is going to meet me there, she wants to help and also learn the exact reasons and the ways to handle this kind of thing in the future. In her 30 years as a Social worker she says this is one of the most messed up cases she has seen.
And....she confided in me that this Case worker had a care home in the 90's, patients were stuffed in to the max, it was none too clean, and they were looking neglected. Remember though, that the CAREGIVERS and home where Dado stays is clean and they love him, nothing to do with them.
SO off to fix things up today, and hoping that this Agent Orange thing will turn to the good. They did say PARKINSONS disease on his doctors report, very good thanks to our nurse practitioner.
Hi Coco, perhaps you can explore the possibility that Dado should qualify for SSDI due to his dx and see if you can apply for that retroactively to the date he was dxd. That way he would receive the ss payment he would have received if he retired at 66 instead of the discounted payment he's now receiving because he retired at 62. GOOD LUCK!!!!
here is a link for some information on Agent Orange, and apparently it does not matter WHERE you served in Vietnam, the whole country was considered a hazard.
Yesterday, God bless our VA social worker, she met me at the Social Security office to straighten out this mess, re work the forms to get our retirement sent back to us. Also we are blessed in Hilo to have really kind agents at the counter who recognize us, and seem to care.
Then, we went to her office, and we spent almost 3HOURS filling out his Disability forms for SS, something, I probably could have done when he turned 62 two and a half hears ago, and the onset started then. The Medical section is immense, I could not have done it without her. As we were right at the VA building, she had access to all his records and we just popped back and forth to get the information. They want to know ALL the doctors and treatments and drugs and dates and AAAAARRGHHH! When we finally got to the "SUBMIT" button, we laughed and hugged each other. She said she would not have wanted to help, but, she knew I would have all the pertinent information as I am anal in a good way. lol. Also, she felt so bad about all that had been going on. Once this is all settled , she is going to pay a personal visit to the Case Manager and set her straight that this CANNOT happen again.
Judith oohhhhhh would it not be awesome if we also got the Agent Orange settlement. I have sent it in, waiting for them to contact me now. The main thing is, they already have the information that the doctor signed saying he was exposed, that he is disabled, and has Parkinsons. Hoping for the best of course.
If and when the Disability comes in, what will happen, as it raises our income just a bit over the Medicaid limit, is , Medicaid will take a very small percentage of it to cover the "Room and Board" payment of $418.00, that I have been paying every month.
I am thinking of taking a course of Advocacy, have seen a few online. I don't want to have to think about poor confused people, especially the elderly, that do not know where to turn.
Wonderful Coco....I have no doubt you will get it. It was a blessing to us also....and especially to me because Jim got the back payment from the date of filing in March before he passed at the end of Aug. and because he was on a down hill slide we didn't really use any of the back pay for fun and games. The extra money really helped for his burial expenses and my travel with his body from Calif. to Illinois. And, of course now I get the wife benefit of $1,200 or something like that and it helps also.
I'm so glad to finally got someone that has their head screwed on right. Keep us posted.
Oh Coco, so glad it's working out for you and that you will get the ssdi and the va benefit. It's been a long hard struggle but due to your perseverence you got what Dado and you deserve. WELL DONE!
thanks ladies, however, it is up in the air on the Va benefit. And I am such a worrier, lost sleep last night over getting his SS back in our account. I mean, it has been deposited there for over 2 years now, and to have it disrupted is awful. Hopefully it will be next month, but if not, once again I have to go to the home where Dado is and collect a check from them....!!
It will be fine. And I am sending up every prayer and cosmic rays and pixie dust on his Agent Orange application. This will of course take some time.
Thanks to everyone for their caring and responses. I hope there are lessons here.
Coco: One of the main things I forgot to tell you and I don't know if the VA gal told you either, the Agent Orange disability requirements are different then the other VA disability claim requirements. You do not have to prove that Dado condition was because of Agent Orange...they (the VA) has to prove it wasn't because of Agent Orange. This is a major difference. Please remember this if you run into any snags. The burden of proof is on the VA and not you as long as the dr. says he has Parkinson and was exposed to Agent Orange. I will still keep you in my prayers on this and don't worry too much. All it took from the VA for my Jim was a letter from the dr. saying he had heart failure and that was that...he was approved within a few months.
JudithKB*, all I did was send in all the application, his military papers., a letter, AND, that letter from the doctor I showed above. The examination was done, and that big wig doctor affirmed that he DOES have Parkinson's etc., and that HE WAS exposed to Agent Orange. We will see what happens, I don't know but it seems to me the big hurdle is done with what that official doctor letter sent, and they will likely need more paperwork.
I did submit copies of the POA last year to the VA clinic, maybe the Agent Orange application will need more. Honestly, though I am hopeful, what will be will be. (oh sure..lol) I am so glad you REMINDED me as it could all just be sitting there if you had not, I had put the paper on the side and in a stressful worried about his Social Security state forgot about it.
It's getting CLOSE! I just received a call from the Social Security office here on our island. The rep told me that as soon as the Representative Payee gets back in my name, (glitchy but it is coming), the Disability will be APPROVED! I can't believe it, it is only 8 days since we filed it. Unreal. Our VA social worker and I did it on here office computer, where all his medical records were on file. I could never have done it without her. It took us 3 hours as there were so many doctors we had to list , and treatments.
oh you mean, there may be a day, where things are, normal?