My husband's Home Health Agency abruptly quit (because they could) when he was hospitalized and needed surgery. They had threatened and otherwise intimidated us for months before this; tried to dump him on two other companies; cut off or delayed needed medical supplies; sent a notice saying they would discharge if any of the workers from their company who were working on his case became unavailable for any reason; lied about Medicare rules, lack of staff,had a rule about only providing supplies every other Friday, then failed to supply needed items and said it would have to be delivered in the next order two weeks after that.
Would not provide needed and necessary medical supplies for use at home until we had to purchase, then they used our supplies and billed Medicare for them as well. They did not resupply or refund for these items needed when their own employees came to our home to care for my husband. Rescheduled or laid off or fired staffers that were working out well in our home for no apparent reason, then would send others who clearly did not want to be here. They started this final campaign the beginning of 2009 when I told them I would be having surgery that would render me unable to bear weight on my foot for 3-6 months. I guess they were afraid that I would ask for night service for my husband as well. They should have been able to provide this, as they were only doing 12 hours/week and Medicare allows as much as 28. A new company came in when my husband was discharged from the hospital, but they are now quitting, only four months later. Pretty much the same problems with them as the last company. (No, we will not "give" you this; no, you do not "need" that, no, we will not send two sizes of gloves; and, the ever-popular "if that person becomes unable to continue this assignment, we will discharge". We are at a loss what to do. No company willingly takes a quad. As soon as employees come to our home, we bond. The workers are never the problem. The administrators are always guarded, reluctant to actually ackbnowledge the need for the urinary supplies, sometimes very specific ones, or the procedures ordered by the doctor. We always have to train new people to do quad care in general, but this is not the biggest problem. Administrators are the problem. They cite nonexistent Medicare rules, will not learn about their responsibilities to their patient and supply accordingly, often leaving those "details" to office clerks who are not clinical, therefore lack the knowledge to comprehend the need, the absolute urgency for the items to be supplied, then regard me as some sort of unreasonable inmate with no place in the mix. Our doctor his given up, pretty much says "good luck with that" when it comes to calling around for another company to carry out the doctor's orders. These companies do as they like and discharge without reason, except that they would have to be more responsible and just follow the doctor's orders and provide necessary medical supplies. Yes, a quad's needs are very large, and the time schedule must fit his schedule.
He is in bed by 9, and cannot be left in bed late in the morning. He cannot eat, drink, in bed, has a choking and swallowing problem, so must be up early to drink water, eat, have medication. Needs a bed bath, range of motion, and must be placed in his power chair and groomed. During all this he is very good-natured, is not abusive or deman-ding, appreciates their efforts. It is like he is being punished for this freak accident, as tho he has a choice, is trying to get away with something. Calling agencies on our own is always difficult. I cannot talk to administrators to describe the detailed care he needs. Intake personnel are often not clinical, and will say they can to the job and start tomorrow, then a couple of days later I receive a message that the company cannot staff, or there is no one available at that time. The last time, something like 26 companies were called, and they all stuck together on this. He almost didn't get discharged from the hospital, they threatened to put him in a facility, where he definitely does not belong. Sorry for going on and on. This is so humiliating and depressing. And scary.
You county people should be of help. Also, go to www.ada.gov. This is the site for disabled Americans. You may get help there. If he is a veteran, he has some rights there. You've been through hell. I hope one of these government agencies can see that his rights are considered.
Carol
What's criminal is that we are NOT alone. I'm sure there are lots of other folks who have fallen thru the cracks like us. The fact that Medicare directs care for these patients who are totally disabled, and that the goal is to keep them well and out of the hospital, should be enough. Home Health agencies can abuse by claiming that Medicare will only let them send out personnel for one hour for aides, or 15 minutes for skilled nursing, etc. Then, they can ask their employees if they are willing to take on his case on this basis, and no wonder they can say they cannot staff the case. This is a minimum two-hour visit. In addition, this company committed to employees to pay for two-hour visits to do the care, then ended up only paying for one hour, again claiming that Medicare would only pay for one hour. The man who is currently substituting for our regular aide cleared $7.50 per visit for two days last week. He did show up this AM, but he had a bad headache. He says he has committed for the two weeks to substitute, so he will do so. I know how he feels, I have a headache, too. Sooz, I'll try the county, but, in the past when I have pleaded everywhere for a referral for a case manager or social worker to be for us, not for the agency, etc., I have been told that my husband is not on county services, so they cannot step in. Medicaid does not have the homebound rule, and they do not restrict billing like Medicare must...although I know Medicare will pay for up to 8 hrs per day, max 28 hours or 36 hours in extreme cases, per week. Medicare is not the problem, but not the solution, either, because they do not enforce their rules. Home Health companies happily enforce Medicare rules to suit their purposes, and they also state their version of Medicare Home Health rules, which are seldom accurate. They want their employees and patients to believe that Medicare has a one hour limit on visits, or that their obligation to provide medical supplies is somehow mitigated by their opinion or their familiarity with the condition of the patient, notwithstanding the purpose or the need for the items. Home Health companies simply do not want the responsibility of quad care, because they can't push people and their schedules around. They must step up and keep the schedule, providing the services needed. Of course, employees quit, take time off, etc., and most companies have arrangements for fill-ins. I have no doubt of this, because they seem able to stay in business, and no one is irreplaceable. Companies do go on without all employees on board at all time. The unemployment rate is huge, and this is a steady job for any company. What is really a shame is that my husband needs Home Health because there is no access for him to receive the care he needs in any other way. He is permanently, totally disabled, and cannot access facilities like other Medicare beneficiaries can, on their own. Because he needs this service, he is also a prisoner in his own home, and we have been warned that if he goes "out galivanting" that he will be discharged and termed no longer homebound. Home Health Hell.
The idea that your husband would "galivant" would be funny if it weren't so sickening that someone actually said this. Keep us posted on what you find. I would think the Americans With Disabilties could help you. www.ada.gov
SLV2009, it's our system again. Assisted living isn't usually covered, so nursing homes are generally used forMedicaid recipients. Check with your state aging services folks, though. There may be some states that subsidize AL. No rule seems to apply everywhere. But I don't know of any grants. If anyone else does, please chime in. Some states may have some help.
Carol
Bob
Here's something I always like to point out to Medicare and administrators: my husband does not have access to proper medical care like other Medicare beneficiaries have. He can not be cared for, properly examined, etc. in a regular doctor's office like other folks can...even some other disabled people can still get basic health care at their doctor's office. I also like to observe to one and all that Medicare does not address in its benefit policy manual, or examples, or CMS guidelines, or illustrations, at any point that I can find, spinal cord injuries or quadriplegia. So they have deliberately left out conditions that are specific to one of the, if not the most, disabling injuries that can affect beneficiaries. Once stabilized, quads are taught to exist, even hopefully slightly improve over time. And, yes, homebound. So homebound by every definition. But HH, again, can further push you around by saying that you cannot go out and if you do they will discharge. This is not a Medicare rule.
Let's face it. They want to take cases that need the least and make them the most money. I think they fail to hire for the best pay, the people who know how to bill properly and use codes for this extreme condition to claim proper Medicare payments.
Finally, if you are seniors, please call the Senior Helpline. It's an 800 number. They will ask you a few questions and may be able to help you find respite care at a very low cost that can help your wife with some relief. Wish I could talk directly to you. We were there, too, and it's amazing what a little social worker interaction could have done for us. It's criminal that the SW at the hospital after Bob's injury was so apathetic. The mymedicare.gov site also has a "Home Health Compare" which lists certified HH companies in your area. If your doctor won't help you, find one who will. We care, Bob.
Glad to hear from you. Here's a little more information: Karen and I are both 58 years old, Karen takes care of my indwelling suprapubic catheter (which I believe qualifies me for skilled nursing care and therefore custodial care) Karen does my range of motion daily and she does my physical therapy twice a week in a swimming pool at a rehab outpatient center (which is probably considered skilled care). Add to that all my personal care (bathing, dressing, feeding, transferring to and from my power wheelchair) My doctor is willing to give me a prescription for in-home care. And I believe Medicare will pay for my in-home care.
The area in which I live only has two Medicare approved home health care agencies. They are willing to send a nurse out to do catheter changes but are not interested in any custodial care. I believe this is due to financial reasons. The profit is not there to send an aide out to do custodial care. And I understand that Medicare does not pay for any respite. I worry about Karen.
Bob
I often call 1-800-Medicare with questions, like: Is it true that.....? or, How can we get the care the doctor is ordering for home health? or, Can I speak to your supervisor, who may know how we can proceed with getting our Medicare benefits?
Did you know that the spouse/caregiver is not required to do such care, and that if your wife is suddenly unable or unwilling (say, due to scary complications, or, for no stated reason at all) she cannot be required to do these cares?
Just a few thoughts, that's all. Remember, I was also writing about not being able to get the care the doctor orders, so I have heard 'em all. We can only hope that there might be some changes for the better at some point. This is no consolation now. I hate this. HH companies have way too much power, and do not have to answer to anyone. They do have a license, but I think they are all pretty safe from any kind of reprimand. I assume that, when you have called, you have asked to speak to the director of nursing or an administrator (clinical). It would also help for your doctor to do the calling in the first place. If you're ever hospitalized, or have been recently, you may find a willing case manager to go to bat for you.
Say, if you have been in the hospital, and the doctor wants you to have home health from there, I've been told the hospital cannot discharge you without having the home health in place. That was our recent experience, and the company put us thru
HLL and quit two weeks ago, four months after starting up. Seems they "couldn't staff". I am 66 and my Bob 71. The "wall" hit me, I didn't hit the wall. Boom. I keep thinking about the spinal cord nurse who told me she would "give me two years" and then I'd be done. I think she was advocating for a facility for Bob.
He barely had wrist flexion, had a feeding tube, pneumonia, massive spasms. Now he has bi's and tri's, been home for three years. His injury was three years ago last week. I maintain that facilities are where quads go when they want to give up. There may be exceptions, of course, but home is best. He has 8 doctors who think so, too. I may not be able to take over completely again. But I have a heck of a mouth on me. They call me the advocate, but we are still holding the short one pretty often. Well-meaning officials often suggest a "live-in" or "self pay". Even HH company employees will suggest these things. I merely state that my husband is a Medicare beneficiary and that there are orders from the doctor to care for his skilled needs. Stonewall treatment.
Final thought: I don't know where you live, but I hope you have a Spinal Cord Injury group closeby. The Christopher Reeve foundation may be able to help you find something. There is great learning to be had, and these groups are often led by someone with contacts for referrals for legal, disability, vocational, etc. options. Wish I could help more.
Carol
Went through similiar with my dad (Non-TB mycobacterium, normal pressure hydrocephalus, atrial fib, mild vascular dementia) ten years ago w/the County, Medicare, Medicaid, etc, . Social workers/drs/etc. were similar to your experience with your husband.
My mom and I wondered why my mother's parents (Congestive Heart Failure, Alzheimer's) and her brother, who were located in a neighboring rural county, had many more services available, and how they got it all so easily when we were struggling and calling, etc and being stonewalled. Their DSS let it the property transfer time drawdown for Medicaid drawdown slide through with a wink and a nod. Found out years later it had been mostly funded to their county through a DHHS Grant to their county for the "Rural Elderly Poor". Grant program terminated in 2000. After that, the CNA's, light housekeeping & cooking, all but the visiting nurse were gone. They also had their small church where he still works to help sit "respite" and my grandmother's two elderly sisters to come at least sit there with her for daytime respite, a nephew to take care of the yard, and they required my mom to come and get my grandfather's laundry and bring it home with her. That's a snapshot of her and my experience 1997-2002 for comparison. I started looking at LT/HHC Medicaid again for my mom last year in anticipation, and got the same psuedo-reassuring pitch for Medicaid-based HHC and skilled care facilities.
A couple of extra ideas for you:
When I had trouble with HCFA/DHHS 2 years ago in regard to a serious screw up by my mom's Medicare Part D provider which Medicare helped me ID but wouldn't interfere in. An old friend suggested I take it up with my congressman's staff since Medicare is a Federal program. She has an on staff liason here in the state who is dedicated to helping facilitate Social Security and Medicare problems. It got some action and quick response, Some congressmen/senators love doing this stuff. You sound as though you could write a compelling letter. Congressional inquiries can light a fire under state and County personnel. Perhaps the Christopher Reeve Foundation can suggest an advocacy type letter. Sometimes the Medicare Administrative Claims agent can be shaken up by Medicare that way.
In regard to another suggestion about the catheter care being deemed as "Medically necessary" for skilled care vs the Custodial Care - again, using hindsight 20/20, I didn't know that the bacteria that can cause exacerbation of both UTI's and pneumonia can be one and the same, and found out the hard way. Perhaps your husband's dr. could make the case that way; better to stop that than to risk another hospitalization.
Hope this helps. You and your husband both seem like sweeties and easy people for a competent agency to deal with.
it depends what his doctor writes as medically neccessary and why in terms of hours.
if you work outside of the home that will be considered in the decision of nursing hours dept of social services, once your husband gets medicaid with nursing, he can hire independent nursing contractors with medicaid number (they are NOT with AGENCIES!!) then you will likely have a fully staff schedule,
all you have to do is advertise for a Rn/ Lpn medicaid provider
they are out there and will call you, these go over and beyond the call of duty as well as pick up where these agencies fail !!