AnonymousJanuary 17, 2014 at 3:30 am
My 44 yr old wife was diagnosed with GBS in early November and had been in the hospital ICU until December 12th. At that point, the hospital and insurance decided that she needed to go to an LTACH (long term acute care facility) to continue her treatment and rehab, which included weaning from the vent. Hers was an extremely bad case of GBS that left her completely paralyzed and on a vent within a couple of days of entering the hospital. Anyhow, she’s been at the LTACH since Dec. 12 and she was successfully weaned from the vent a couple of weeks ago and is currently receiving a second round of IVIG. The first round was given within days of admission to the hospital ICU. Once this round of IVIG treatment is complete, the LTACH and insurance want to send her to a SNF (skilled nursing facility) for rehab. I disagree with this strongly as my wife still has very little movement in her arms and legs and because the pain has not been effectively managed yet, her participation in occupational and physical therapy has been very limited. She still has the trach and a peg tube for feeding, but speech therapy has been able to get her talking again w/a Passy-Muir valve on her trach. She’s also started eating and drinking again over the last several days. So, she is making lots of progress, but I’m just not comfortable with her going to a nursing facility while the pain is still a major issue and she has really done little therapy up to this point. I’ve been working with my case worker/advocate with insurance as well as my wife’s doctors and our LTACH case worker. During the last peer to peer review that was held with her doctor and the medical director with insurance, the medical director stated that if there are no further treatments planned beyond the second round of IVIG, that she would no longer meet the criteria for staying at the LTACH. And really, there are no other treatments planned, at least for another 8 weeks when she may or may not need another round of IVIG. But, the pain is still a big issue and I just don’t feel she’d get the care she really needs right now at a nursing home. The real kicker though is that my insurance says that they’ll only cover 100 days in a skilled nursing facility. After that, I’m SOL. Because I’m pretty sure at my income level, we would not qualify for Medicaid. So, heaven forbid, my wife is not making substantial progress within that time frame and continues to need care because I don’t have a clue what I would do at that point.
I know I’ve kinda skimmed over a lot of details of my wife’s condition and I’ll gladly share her entire story if there’s an interest, but right now I’d just like to have a better idea of what my options are. Is there anything else I can do to try and keep her at the LTACH? Her doctor is giving me the impression that they are at the mercy of insurance and that his hands are tied. And if/when she does go to the SNF, what are my options if we exhaust the 100 days and she continues to need care? My wife is an Australian citizen. She has a social security number, but has not worked in the 13 years she has been here. So, I’m thinking she would not be eligible for any SS or Medicare benefits? Any advise would be great.
Ideally, I would like to see her pain issue
January 17, 2014 at 4:06 am
Unfortunately, a lot of treatment does depend on the insurance coverage. I can’t give any advice or information on insurance, but I am familiar with a SNF. I went to the SNF after the acute care hospital, and stayed about a month. It was two sessions, though — one week and three weeks. After the first week I went back to the acute hospital. My second trip through the SNF was when I made much of my recovery. I went in unable to sit up or even feed myself, and went out able to feed, do easy transfers, and move my wheelchair. I received physical and occupational therapy six days a week for about two hours. From there, I went to acute rehab for five weeks, where the therapy regimen was three hours a day.
I don’t know why you want her to be in LTAC. Therapy is cricial to recovery, and she can get that in a SNF.
AnonymousJanuary 17, 2014 at 12:37 pm
Hi, GH. Thanks for the response. The reason I’d like my wife to stay at the LTACH, at least for a bit longer, is so that they can get her pain meds sorted, enabling her to participate a bit more with therapy before moving to an SNF. I’ve toured several SNFs over the last few days, and some of them do seem like nice facilities. But, I’m just worried that because these places are rather crowded and there is not much medical staff at all, outside of the RNs, LPNs and CNAs assigned to the specific wings, that she would not get the care she needs. I mean, one place a visited told me that the nurse to patient ratio was 1:20. That’s a scary thought. However, I do understand your point, at least from a rehabilitation level, that the SNF could be very beneficial to helping her get back on her feet again. I really just want what’s best for my wife. And right now, I don’t think that a nursing home is where she needs to be yet.
January 28, 2014 at 11:46 am
Yes, 1:20 ratio is definitely a scary thought.
January 17, 2014 at 2:12 pm
A ratio of 1:20 is terrible. The SNF I was in wasn’t like that. It had its own doctor, and nurse assistants and therapists as well. Pain meds were not a problem, but by the time I went in the second time, I was off pain meds. The goal for GBS is recovery — to get off pain meds and rebuild strength. The best facility is one which has the best program for rehabilitation.
When I was in the active phase of my illness, I had severe leg pain and was taking powerful meds for it. But I had side affects from the pain meds, in conjunction with immobility and my neuropathy, which were even more painful. I stopped them while I was dealing with the complications and discovered that I could get along without them, as the leg pain eased when recovery began. I never went back on them, although I still have some residual pain, especially in my feet. You shouldn’t assume that she will need painkillers for a long time. It’s better to get off them as soon as she can.
January 21, 2014 at 2:04 am
Everyone’s experiences with nursing homes are different. Some good, some bad. You are right to be concerned with the 1-20 ratio. That is rough especially with a trach. that will need to be cleaned. Be vigilant with making sure they are cleaning and pay attention to catheter if she is still cathed. Not sure how the Australian citizen thing will work regarding Medicaid. Medicare does not pay for a nursing home past 90 or 100 days can’t remember. If there is no progress and she plateaus they kick her out faster (insurance or medicare if she is eligible regarding citizenship) If you are married does that have a bearing? Hypothetically, if she is eligible for medicare, once it runs out she can qualify for Medicaid if you have a proper trust. If you don’t get on it yesterday!!! You need to see a cela certified elder law attorney. Certified being the operative word. They will instruct you on setting up a trust with a land trust as well. They will give you guidance on how to protect your assets. Otherwise a nh is a minimum of 87K a year not including meds therapy or doctors. You only get one chance to do things right so make sure it is a cela. They will also be able to advise on the citizen issue and what if any benefits she would be entitled to. If she is not a citizen and indigent (which is essentially what will happen with the set up of a trust) she has to legally be able to go somewhere I just don’t know the parameters of the law with the citizenship issue. Heck who knows maybe she can sign up for Obama care and it might work in your favor? On a positive note based on your description of her recent progress it seems she will make headway and be able to return home during the allotted time the insurance gives. Be strong, this will be taxing on you but she needs you!!
January 21, 2014 at 2:16 am
Also, make your presence know in her current facility and the one she will be sent to. Try to go every day if you can. Feedings are rough and do not always get done. Check up on them during therapy sessions to make sure they are giving what they are getting paid for. Go at different times so they don’t know your schedule. You can go to your states website to look up deficiencies at each of the nursing homes. It might be something like blank…dph YOur state first initial say texas, so tdph nursing home surveys search. Don’t be fooled by websites like caring parents and such. While they try to do their due diligence they do not address actual state/federal violations. They usually just rate by a star system. Ask the social worker at your hospital or current facility how to access the state survey for nursing homes. When reading the violations try to keep them in perspective. You have to realize this is not an ideal situation and you have to be willing to overlook some things. You will not find a perfect place. You just have to find the best. Close in proximity to you is paramount. or your work if you would be visiting from there, that way it will make things easier on you. Each state has a dept of public health system that has different groups to help you with concerns. An ombudsman is your best friend should you have issues. What state are you in I could try to find the link you would go to. if you would like to talk privately we could do that
AnonymousJanuary 24, 2014 at 2:47 am
Dawn Kevies mom has written excellent advice. Do you have family and friends who can drop by the facility so all your presence is known?? Talk to the staff, ask questions, make sure any doctor staff meetings regarding your wife are attended and issues addressed. Stay on top of any of your wife’s physical needs especially her pain control and make sure the facility address them. I know this is hard for you having your spouse go to a nursing facility but there are nicer ones out there.
Have you contacted this site’s office to ask questions and maybe they can direct you to another source for more help?
January 28, 2014 at 11:40 pm
Having stayed in 3 SNF’s while I was paralyzed, I think few have good support for GBS/CIDP patients. It really comes down to the attitude of the CNA’s who primarily provide the care to patients. Many CNA’s just don’t care about the patients; a few are caring and will truly help. Others are very calloused having had to deal with patients with Alzheimer’s, in some kind of vegetable state, or who can no longer communicate and function well. The quality of the SNF staff can also be a reflection of patients and their abilities to deal with life (or end of life) in the SNF.
The better SNF’s have full time staffed on-site OT/PT departments, grooming departments, full kitchens overseen by dietitians. Only the very large SNF’s will have on-site doctors. SNF’s usually have a primary care doctor on-call along with several other specialty doctors. You doctors will most likely NOT be allowed to see you in an SNF, unless the SNF is run by a hospital your doctor is affiliated with.
My insurance required a re-justification of my need to stay in the SNF at the end of every 1-2 weeks. Unfortunately, the justification report writing usually fell onto the social worker at my SNF. I had to fight with her over her progress reports because she had no experience with GBS and couldn’t understand why I was not improving faster. My SNF would not accept reports or recommendations from my own doctors (including my GBS neurologist). So, the insurance justification process may not be a fair process at all SNF’s.
Picking a good SNF goes beyond just looking at the ratio.
AnonymousFebruary 20, 2014 at 3:55 am
Thanks for all of the responses. I have been advocating for my wife from day one, spending hours a day with her in the hospital, every day, working with all of her caregivers. Everyone in all of the facilities she’s been in knew me very well. 🙂 On January 24th, she did move to an SNF to continue her rehabilitation.
Unfortunately, after three weeks, I’m having to fight a battle now with my health insurance provider for her continued coverage at the SNF. I learned this past Friday from my insurance Case Manager that they would no longer be certifying her stay at the SNF beyond this past Monday because they didn’t feel she was making enough progress to continue the level of care she’s currently receiving. It’s complete nonsense. When my wife was transferred to the SNF, she could barely lift her arms off the bed and had very little movement in her legs. Her arms have gotten much stronger and this past weekend she was actually able to give our son a hug for the first time in over three months. She’s also showing a lot more movement with her legs, but she still needs complete care because she’s still not able to stand and has no functional use of her hands. There’s a lot more rehab that needs to be done and even though she’s showing improvements, insurance feels that because over a three week period she still is at a level of needing complete care, that she’s not meeting the criteria for the care she’s receiving. So, over the past few days, I’ve been really scrambling trying get things sorted out. On Friday, after I found out about the denial of coverage, I filed an expedited appeal with my insurance which was promptly denied on Saturday. So, I thought I had two more appeals based on what my Case Manager told me, but found out on Monday that I only had one more, which is an external review. My wife’s doctor, therapists and social worker at the SNF have really been going to bat for her and have put together a lot of documentation that hopefully will show that she really needs the care she’s getting now. I reached out to my employers HR dept. and spoke with an Advocacy Support specialist to see if they could assist me in any way. Nope, they can’t override Aetna’s decision and the only thing they could suggest was for me to seek legal advice. So, at this point, I’ve submitted an application for Medicaid. From conversations with management at the nursing facility, it should not be an issue getting my wife approved. The nursing facility is willing to keep her there until her Medicaid goes through, then retroactively bill Medicaid for her stay. But, Medicaid will not cover her meds and rehab. My hope is that the external review works out for us. And if Medicaid for whatever reason doesn’t come through, I’m not sure what I’m gonna do yet. I may not have a choice but to consult an attorney.
February 20, 2014 at 11:14 pm
I had a related issue with my insurance carrier (Anthem Blue Cross) where they denied coverage for my $18K power wheelchair. I went through all their internal appeal processes only to be denied coverage. I appealed to my State Department of Insurance here: http://www.dmhc.ca.gov
I filled a grievance against ABC for improper denial of coverage and requested an Independent Medical Review (IMR). This process actually took a shorter period of time (~2 months) than the 3-4 months I went back and forth with ABC just to get their denial multiple times. The State found that ABC had ignored proof of medical necessity and violated my rights. ABC was given the choice to pay for my wheelchair or a much larger fine from the State.
Although my situation didn’t specifically deal with a SNF, it could have. The point is that insurance companies like ABC and Aetna will bully us to get out of paying medically necessary bills. Maybe your State has an appeal process similar to that of California.
Medicaid may not provide the same level of benefits you may be able to get thru your State’s low income insurance programs. Please see my post here for more info about Medicaid and other options: http://www.gbs-cidp.org/topic/no-insurance
I had exhausted my 100 days of SNF coverage under my insurance plan before I came home. I did have to fight with my insurance several times when they wanted to send me home prematurely. I also fought with them over coverage for physical therapy in the SNF; they said I wasn’t progressing up to their standards. I discovered their standards do not include GBS and, because of my diagnosis of GBS at the time, I asked them to grant me additional time to show progress … they did after we sent them several certified letters appealing their prior decision.
I did not use an attorney to help me with my health care related battles. I went with an experienced private case manger/social worker. I found one (on Craig’s List) who was also a former Deputy Public Guardian with 25 years of case management and senior social worker experience. She helped me navigate all the red tape I was confronted with while I was helpless to respond myself due to paralysis.
There is a way to get around the income eligibility requirements of the low income health care programs. You would need an attorney to help you setup a special “trust” to shelter a portion of your income and secure your assets.
Your wife is lucky she has you to help her!
AnonymousFebruary 26, 2014 at 3:14 am
Thanks for the feedback. I’m still waiting to hear back regarding my insurance appeal and DSS has sent a letter today requesting additional info, copies of my paystubs from January in addition to a copy of my wife’s picture id and immigration verification (she’s Australian, but a resident legal alien. Been here since 2000).
I’m really starting to get nervous regarding the Medicaid approval. Even though the Nursing Home said they didn’t think it would be a problem to get her approved, I do make a decent wage, about $78k year. But, we are a single income family with a young child, a $200+k mortgage and really no other assets other than a couple older vehicles. I do have a 401k through my employer, but since I can’t touch that money, I don’t believe that is considered income. And we have maybe 3k-5k in the bank at any given time. So, I dunno.
My wife does have a social worker at the nursing home, but now I’m wondering if I should maybe consult with a private case manager/social worker as you mentioned. I had a quick look on Craigslist, but could not find anything in our area other than employers looking for case managers. We’re in Richmond, Virginia. I’ll keep plugging away though. If you have any other suggestions, please let me know. 🙂
February 26, 2014 at 6:10 pm
Please trust me on this look for a CELA certified elder law attorney in your area. They will be able to help you with everything!!!! You really do only get one chance to do it right or you will waste thousands in appeals attorney fees etc. They will put all of your assets in a proper trust so she qualifies for Medicaid. If her name is on any savings or the house and you have not yet removed her name she will not qualify for Medicaid until there is a spend down. You will get to keep some money but the rest goes to her care. You get to remain in the house till you sell or die or pay off what Medicaid paid in. YOU HAVE TO DO THE TRUST. Do not be offering info to the social worker. regarding someone on craigs list, it is an option but a risk if you do not get the right person. It is easy to burn through funds with these advocates. They are not really advocates because they are getting paid. The laws are different state to state so make sure it is someone familiar with your state laws. The CELA attorney is familiar with nursing homes and medicaid and how to save your assets. It would be money well spent. Be careful who you trust at the facility. It is a business.
AnonymousFebruary 26, 2014 at 7:24 pm
Thanks for the advice, “Dawn Kevies mom”. There is a CELA certified attorney here in the Richmond area. I’ve set up an appointment to meet with him next week to discuss my situation. Unfortunately, the Medicaid application is already in progress, so I’ll just have to wait and see how that goes at this point.
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