Insurance Question

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.

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.

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!!

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

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?

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.

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!

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.