I believe by now it is pretty much a given more dialysis is better. It is also pretty much a given with the number of patients in-center times can’t be increased. Would it really be that unreasonable if part of the Federal Regulations for dialysis has something in it stating that if a unit or (units)
serve x no. of patients then a home hemo program has to be available. In our area there are 3 centers all owned and operated by the same hospital. It seems to me if just one of these centers had a home hemo program it could get enough patients to pay for the program.

Marty I think you are right that CMS needs to do something other than suggest that people should be able to dialyze at home.

There is currently a move to reimburse based on outcomes - the Baucus Bill S.2562. This particular Bill is not expected to go forward but the idea of reimbursing for outcomes is here to stay. I think in addition to rewarding outcomes CMS reimbursement should reward opportunity.

In other words I think part of the formula for determining who should receive bonus payments should include:[ul]
do the consumers have the choice of all treatment modalities?
do the consumers have the opportunity to dialyze in the evening?
do the consumers have the option to do self care?
do the consumers have the option to run as long as they require?
does the unit have a high over all transplantation rate?[/ul]
The Conditions of Coverage could address these things - they say new Conditions of Coverage are suppose to be coming out in the next few months but they have been saying that for a long time.

Bill, Your post makes a lot of sense wish you were in politics.

I’ve often even thought that units owned by different companies could partner and share a home hemo program, but I suppose there really is no incentive. There’s always a lot of “fluff” when one starts dialysis, paperwork and booklets telling you that you have choices, and how much the company cares about your health and welfare; as my mom would’ve said “it’s all a bunch of hooey”! Show me the proof, because I don’t see home hemo as a choice for most of us. If I want in center I don’t have to fight, and if I want pd or a txp. I don’t have to fight, but for home hemo I have a hard time getting any help or support from anyone. Marty and others doing home hemo have been my support.
Where I live there is only one unit for a large county. It is only open three days per week, running two shifts those days, with no evening shift available. They start putting pts. on at 6 am and end at 12n… In the neighboring county of Morris there are five units sprawled out acrossed the county, but not one of them offers home hemo program, and only one offers a pd program.
The first unit I was at was in Morris County NJ, and they offered home hemo through a sister unit, but charged extra for it. Who is going to pay extra to do home hemo? FMC was the co. involved, and they are the largest home hemo program available. Looking back, the unit (co.) I was in was getting 13k per month from private ins. co. and they didn’t want to invest any of it in homecare for me, so I was discouraged. It’s not just a matter of choice, it’s a matter of money. Companies decide on an individual basis who is worth more incenter, but of course they would never admit that. They knew I didn’t have another unit to go to so if I weren’t allowed to do home hemo they could keep the 13k and most of it would be profit for them as I would be Private ins. primary for the next few years. I told them I wanted to beon/stay on home hemo and not get a txp. but they still wouldn’t allow me to do home hemo without paying extra. so even the units who offer home hemo. crunch the numbers and plays games and if they see you are worth more being an incenter pt. will put roadblocks in the way. The proof is in the pudding so to speak because there are many others in their home programs that weren’t told they must pay extra.
They always site the startup fees, cost of machine ect. as a drawback to offering home hemo, and yet the same companies are building and buying up other units; doesn’t that have “startup costs”? Lin.

Lin, You hit the nail on the head. All you hear is patients don’t want it. Well of course they don’t theres no programs, no education and very few home patients they can see as models. Patients expect there Drs. and dialysis staff to tell them what the options are and they don’t if they don’t offer home hemo. About a year ago, I had a dialysis nurse contact me. He was interested in starting a home program within the centers he worked. He was totally shocked I was doing it at home. He was from a town about 70 miles from me but it just happened his mother-in-law lived 1/4 mile up the road from me and knew of my father’s condition. Anyway I called him when I got to thinking about the Billboard thing. I was hopeing he would tell me he had interested patients then I would have thought telling them home hemo was their choice through a billboard might do some good. So I asked do you have patients interest in home hemo. His reply I don’t know we don’t tell them about it. So I am thinking OK I tell them it’s there choice let them know they can log on here for information but it’s just smoke. You and I both know without the centers willing wanting to have a program it’s just a no go. I finally have reached a point where I feel as though I have batted my head against the brick wall enough trying to get to patients where the programs aren’t even available. I will stay on the internet and answer questions and if someone contacts me I’ll help them but I’m done trying to reach patients in our area. I get just as many roadblocks trying to educate them as they would if they tried to get into home hemo.

I can certainly understand your frustration Marty! Some of those people will never do home-hemo, but I think some will see others doing it and know that they can too. That is however how I got interested, reading about how others were doing it, and too how much better they felt. All in all there’s leaders and followers, that’s life.
It’s trully a vicious circle because pts can have it until centers offer it, and centers won’t offer it because (or so they say!) no one wants to do it. I guess that makes me a nobody lol I’m sure there are, or at least would be more folks interestd if they heard about others who are doing it. Consider that most people in dialysis units might not have internet access or feel comfortable going on-line, and so for them the unit staff is the only source of information they have access to, and if they aren’t told won’t even know such a thing exists. I tell all the pts. in the unit I can of my wishes and they invariabley say " I didn’t know you could do that". Of course not, because no one is telling them that! Lin.

Lin, I think it’s apparent you have to have the programs to get patients interested. Just like my business I couldn’t get customers before I had something to sell. Nobody wants to hear BS and until you have it; it’s BS.

Right you are Marty! I’m sure every unit is “complying” by having the info. on bulletin board that lists homehemo as a choice; just don’t ask staff if you can do it because they will suddenly become toungue tied.
No lie, the social worker at the first unit told me she looked into the matter but could find no programs. Now I find one on this site, and worse yet hear it’s been in exhistance for quite some time now. It’s about one hour away from the unit I was at and so she didn’t look too hard. It also occurs to me that at that time the unit was getting a lot of money from ins. co. and didn’t want me to leave and go to another unit so they weren’t going to try too hard to help me find a program. I think they just hope that after awhile pts. will just give up, or give in and stay in-center; it’s easier for them that way. Lin.

Hi y’all,

In your social worker’s defense, Lin, until we put this new database together, there wasn’t any easy way for ANYONE to find home dialysis clinics–patients or professionals.

Beth (who monitors these boards as well) is a renal social worker herself, and a past president of the NKF’s Council of Nephrology Social Workers (CNSW), the only professional organization that renal social workers have. About half of all the U.S. renal social workers all subscribe to the CNSW listserv, which Beth posts to on a daily (if not more frequent) basis.

So, you can be sure that we’re alerting social workers repeatedly about this new resource, so when patients ask them about home dialysis, they’ll be able to give more informed answers.

Ty Beth, I’m glad there will be a reliable source of info. now. The social worker I had at first unit wasn’t any help to me or most of the other pts. who came to her for any kind of help; thank goodness most social workers aren’t like her. It’s my feeling she didn’t even need a computer program to find out that St Joes had a program because she worked at another unit in that same area!
In the unit I’m at now no one offered home hemo, just a txp. or pd. They don’t even know where there are programs so I’ve asked them to consider having their own program and they will think about it. I will mention the site and listings to the social worker there, but I’m guessing she must know about it as their info. is on this site. Lin.

Dori, Your message is heard and received no one can tell you better than Lin and I that it’s HARD REAL HARD to find the programs. So in that respect you have a point. But don’t you think if Lin and I can find our own programs that being in their position they should at least try to stay on top of what’s available. What harm would it do if they called a couple of units a month and said hey were wondering if you offer home hemo in case we have a patient request? Or once we find the unit for them at least making a call for us about getting into the program. Once of the biggest problems I had to overcome in my search was that no one wanted to talk to me because I wasn’t a social worker calling, or a nurse, or even a dialysis staff member. I had to have the nephrologist call someone once just to get the receptionist to accept a call from me when it came. I’m not beating up on Social Workers I love the one we have in the nocturnal program; but I’m not giving them all a complete skate just because it’s REAL HARD.

Hi Marty,

There are no national laws (or even guidelines) in the U.S. regarding how many staff a dialysis clinic must have to care for patients. So, with every dollar tight, one of the first places clinics tend to cut back is in the numbers of social workers and dietitians. It’s not at all unusual for one renal social worker to have a caseload of 150 or even 175 patients.

Of course what this means in practice is that social workers are rarely able to do actual “social work” (the counseling and assessments that they are trained to do to help people adapt to chronic disease). They end up spending their work days putting out fires–finding people transportation, dealing with Medicare and insurance billing, and trying to locate cheap meds for people who can’t afford theirs. Plus tons and tons of paperwork, of course.

Where am I going with this? Just that it’s very, very unlikely that a renal social worker in the U.S. has time to make even a couple of extra phone calls to track down resources for patients. Many clinics don’t even have computers for their own staff to use (let alone for patient use). Some social workers are dismayed that “the list”–a CMS listing of every dialysis clinic in the U.S.–is no longer printed out in paper. They don’t know WHERE to find ANY dialysis clinics, in some cases…

So, if a social worker isn’t being helpful, it may be that he or she is burned out and not very good at his/her job–but it’s probably more likely that he or she is overburdened with more work than can possibly be done in a day, and just can’t take on even one more tiny task.

Dori, You know this is pathetic. Maybe some of these centers should ask for volunteers.

Hi Dori, You bring up good points, and this is just part of the problem, but I believe in my case no one wanted me to leave the unit. I was on private ins. at the time and the co. didn’t really question the exhoritant fees all that much. The unit I found on this site must’ve been available at that time too, and I believe staff knew it especially since where I live staff in dialysis units tend to work in more than one unit as most of the units don’t hire fulltime. A computer data base isn’t needed to find a unit (homehemo program) that is within half hour away. At one point she even told me she had called “around” and found nothing, and I believed it.
Marty, you bring up good points too! In fact, I repeatedly in the first few years of dialysis, and even before I started inquired to my neph. about home hemo and he said he would help but didn’t. It’s supposed to be my choice but I was continually steered in a direction THEY thought I should take. My neph. wanted me to get a txp. and thought that would be the answer to my prayers. He would forget he had asked already and would repeatedly ask me if I had a donor. I would tell him no, I want to do home hemo. He would say “you’re so young, why would you want to do that”. I’m a grown woman who has raised a family and weathered all sorts of storms, but now I’m not even allowed a choice. That’s not the dignity and respect I was promised when I started dialysis. The last and final straw was the sexual harrassment in the unit, and being told nothing could be done/no proof. Feeling physically bad was bad enough, but add to that emotional turmoil and it’s just too much for me to handle, and I shouldn’t have to. I fear that if I stay in a unit setting I will lose my health, and my spirit. Lin.

My case was different than what the norm. probably is so let’s discuss what is likely going on. There aren’t enough home hemo programs, and many of the units that initially got certs to offer it either never had a program or have one that is now defunct. Social workers are already stressed out with a big workload, and too are shuffled from one unit to another, just as the dieticians and machine techs. are, and in fact this is what I see at the two units I’ve been at. It’s so difficult (next to impossible!) to find home hemo units that no one wants to tackle the job. With all that I’ve run into I must say if I were a social worker doing this for a pt. I would be at very least beating my head against a wall; in fact there are days when I’ve come pretty darn close to doing that lol
If we had the programs and they were accessible to us neither pts. or social workers would be stressed out. Pts. could spend their time and efforts on other things, and so could the social workers. Getting more programs, and putting them on this site would be super. Well, we have the start of the list here, now what we need are the programs! It’s such a vicious circle. Marty, Beth, Dori, You all know more about this subject because you’ve been fighting longer than I so if there is anyone in particular I could contact or write letters to let me know. I’m not that great at that sort of thing, but I have the motivation to learn. Maybe I should draft a letter and send to all the companies too. Lin.

Lin, I know exactly what you are saying. Neither Dad nor I relish the long drive to clinic visits but I have a real hesitation on changing. If the Rochester unit is serious on nocturnal they are going to have to prove to me they they can deliver EXCELLENT service because that is what I am used TOO and that is what keeps my life SMOOTH and UNCOMPLICATED. We live 5 hrs away but when our macine breaks down the guy is here the next day. Quarterly maintenance I don’t even think about. THEY call ME when it is time. If you call there no one gives you the run around. Everyone knows what everyones job is and your directed in the right direction immediately. The place isn’t small either and they have 3 centers total. People make the difference. And that statement is true on both sides patients and professional. If Management isn’t willing to correct the problems I can guarantee you, you and I are never going too. I have worked in Corporations on the low level and on the high level and I have had my own business. If you have the right people you can conquer all problems. If you have duds you’ll live in circles forever. And unfortunately in todays world most top executives are duds. Get a paycheck smile at the press and say were doing great. You’ve read the propaganda.

I think this board will do a great deal to eduate patients and is truly the best resource a patient can have on home dialysis. But I think were way ahead of our time trying to push it. The programs have got to come first.

Here is an idea that is not fully formed. There is something called Method II where the consumer becomes their own provider. I think George Harper went the Method II route in order to put his machine in his RV. You bill Medicare directly for your supplies - I think - instead of getting a three time a week composite payment, so I would think that it would be cheaper for CMS. Well what if they included in their billable expenses the ability to pay for the support a home patient needs while still being their own provider.

So the home patient would pay a local unit some amount of money each month to have backup rights and the unit would still get a per treatment payment if backup was needed - just like transient dialysis. Maybe this site could have a section talking about being independant of any dialysis company. What services would have to be available? What support services would Medicare need to allow reimbursement for, for it to be safe and reasonably uncomplicated to be your own provider?

Maybe a company you pay a monthly fee and they would remote monitor the treatment - like an alarm company.

Or units could train someone and be available for questions for a one time fee and a monthly fee.

What would have to be in place for the Method II option to be viable?

Bill, I called George Harper one time to talk about just this subject. Only unfortunately I didn’t quite understand it all. I would appreciate it if someone could tell us how being your own provider is arranged.

I understand

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