My husband is a quadriplegic and we can't find a home health agency that is willing to care for him. What can I do to get the proper in-home care for him?

Dear MK, My heart aches for you and your husband. I have been in similar shoes, when nothing seems fair and no one has any compassion. Trust me, you are not alone. We found that going through the "County' [where you reside] will be your best bet. You will be putting the ball in someones elses hands who should have the knowledge and know-how to get the right agency for you and find out what the problem is if they should decline at any point. You should find it in your phonebook for your county department of human services, adult services unit. A social worker will be assigned to your husbands needs and follow through with visits 4-6 times a year to make sure his [not yours] needs are being met. If at any time you are not satisfied, you may check with your social worker about a neighboring county. Sometimes they can cross the county line to help out. When the new health care nurse comes to do the first home visit, tell her what you would like as far as hours and products. She will write it all down and work with both of you. If something doesn't work out, let it go for a while. Try to be cooperative with the little things that take time to adjust. Also, remember that sometimes CNA's have vacations and they may be pulled from the case and have to fill in for others. Nothing can ever be perfect or exact, but you will get through it with the love you and your husband share. If he thinks you're stressed, he may feel it as well. Just let him see you smile and shrug off the little things. Just focus on calling for a social worker to help you out, then sit back and take a deep breath. It will get better. I'll be watching for a follow up from you. Keep us up dated and good luck to you. You deserve it. ~Sooz~

I am a C3 quadriplegic (not on a ventilator but with no arm movement) on Medicare my wife is my caregiver. We have contacted local agencies for in-home care and the response is that they do not have enough help to take on another quad or they already have their quota of quads. My wife had to be gone last month for a few days and if I would out of pocket pay the $20 per hour for an aide (at a minimum of two hours per visit) and a $40 per hour for a nurse to do my bowel program (a minimum of two hours) they would be more than happy to fill my needs, however if I went through Medicare they were unwilling to provide help. Is there a problem with the agencies getting reimbursed through Medicare? With a little respite my wife would be more than capable and happy to provide my care. What happens when we both get older? A nursing home was willing to care for me for the few days she would of been gone at $158 per day but said Medicare would not cover that cost, I would have to out of pocket pay.
Bob

My mother is 90 years old and in pretty good health. She just gets around very slowly. She has no money and depends on Medicare and Medcaid. She lives with my sister however my sister is no longer able to care for her anymore and I'm not able either. Is there grant money available so she could stay in an assisted living facility or is our only option full skilled nursing?

Dearest Sooz and 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.

Hi, Bob. MK again. My husband's name is Bob, too. If you don't mind, a couple of questions: Do you have a skilled need? In other words, does your doctor (or will he be able to) write orders for skilled nursing for you from a Certified Home Health company? My husband needs his catheter maintained and changed by a nurse while he is in bed. If not for a skilled need, Medicare will not cover what they call "custodial care". Home Health exists for Medicare to keep beneficiaries home and not admitted to hospitals for illnesses and conditions that can be avoided or maintained at home. I'm assuming your wife was told she had to learn to do this, but it is not so. Well, I guess I could go over all the lies told (and only told, not written anywhere in the medical record or that you could prove) by home health personnel. But that would take a couple of days and fill this blog several times over. Medicare writes that this catheter care is a skilled need. If your doctor can write orders for this care, then you are also entitled to a bath aide, and Medicare pays for up to 28 hours per week provided by home health. Physical Therapy and Occupational Therapy are also skilled needs, and there are others that HH is able to provide. Simply getting this help, along with a bath aide for bathing and dressing and grooming is a huge load off. If you have not, please get familiar with some of these published facts through Mymedicare.gov. It will help you. You can call 1-800-MEDICARE for help with specific questions, also.
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.

Hi MK
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

Hmmmmm. Bob. I think Medicare needs to hear about this. I do not believe that administrators of these companies are so ill-informed that they believe the claims they make regarding low payment for care, etc.
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.

FORGET ABOUT YOUR COUNTRY helping you they are the problem not the solution my husband died almost 4 months ago and we have to get and pay for our aides medicare let us down and I am still angery about how we were treated and our Gov. is a handicapped person himself and things got worse when he took over from a discrased Gov. and now he wants to close hospitals and nursing homes and will not give families who care for their loved ones help at home some one needs to step up and give caregivers a hand-we do not ask for much just some compassion.

Location, Location, Location, and Budget, Budget, Budget.

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.