I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Medicare/Insurance => Topic started by: Meinuk on November 11, 2010, 12:24:16 PM
-
Here is an over view of the ESRD Networks in the United States. I am curious, do IHD members know about the Networks? Are there any PAC members out there?
http://www.esrdncc.org/index/cms-filesystem-action?file=/ProgramOverviewFINAL.pdf (http://www.esrdncc.org/index/cms-filesystem-action?file=/ProgramOverviewFINAL.pdf)
The Medicare End Stage Renal Disease (ESRD) Program, a national health insurance program for people with irreversible kidney failure, was
established in 1972 with the passage of Section 299I of Public Law 92-603.
In 1978, the U.S. Congress authorized the formation of ESRD Networks Organizations to further support the ESRD Program (Public Law 95-292) and currently eighteen (18) ESRD Networks support the federal government in assuring appropriate care for patients who receive treatment through dialysis facilities and kidney transplant centers certified by Medicare.
The Networks’ responsibilities include: quality monitoring and improvement of the care ESRD patients receive, the collecting of data to administer the national Medicare ESRD program, providing technical assistance to patients who have ESRD and providers, and addressing patient grievances.
Each of the Networks’ websites may be accessed from the NCC website: http://www.esrdncc.org/ (http://www.esrdncc.org/)
-
I didn't know about the Networks. Perhaps it's because I'm not on dialysis yet, but if I were, how would I know about them? Is this information that is given to a new dialysis patient at their clinic or by their social worker? My mom was on dialysis for five years before she died this past summer, and she never mentioned the Networks to me.
-
The networks are for people on dialysis,they are paid for by CMS (contracted) and each unit that is a Medicare unit (mostly ALL units) are mandated to work with the Networks.
The Social Workers should be telling patients about the Networks. Also, there are Patient Representatives (PAC Reps) who act as a liaison for the Networks.
If you are in a unit and you don't know about the ESRD Networks, ask your Socialworker or Administrator why there are no patient publications being given out?
Also, there should be a grievence procedure posted CONSPICUOUSLY in the unit, there you should see the contact information for the network in your area. All Networks maintain a toll free number for patients or family members with questions or complaints.
-
Here are some random examples of info available to patients/families via the networks:
http://www.nwrenalnetwork.org/P/PtEdMaterials.htm (http://www.nwrenalnetwork.org/P/PtEdMaterials.htm) Some PDF links from the NW Renal Network
http://www.esrdnet17.org/Decreasing%20Patient%20Provider%20Conflict%20(DPC).html (http://www.esrdnet17.org/Decreasing%20Patient%20Provider%20Conflict%20(DPC).html) Decreasing patient/provider conflict (network 17)
http://www.esrdnetwork18.org/patients/Resources_and_Information.php (http://www.esrdnetwork18.org/patients/Resources_and_Information.php) Patient Resources from Network 18
http://www.esrdnetwork.org/patients/patient-representative.asp (http://www.esrdnetwork.org/patients/patient-representative.asp) Patient Representatives Network of Texas
http://www.network13.org/disaster.asp (http://www.network13.org/disaster.asp) Disaster Planning, Network 13
-
I do remember seeing the complaints procedure prominently displayed at my mom's clinic. She may well have been told about the Networks but didn't pay much attention. I suspect that a lot of patients allow the plethora of information just sort of go in one ear and out the other.
-
My husband did not know about the network. He was never told about it by anyone at his clinic. We were having issues at his clinic about giving him his EPO injections at home. His clinic refused to allow us to do it, but had no good reason why. They finally let us do them at home, that lasted two weeks then they told us starting Jan 1st he had to travel to the center weekly again to get his shots. They used the excuse it was because of the new bundling. I posted on a Nxstage thread about it and I was told by many that bundling had nothing to do with EPO injection. One member gave me the info on the network after my call to the advocate she said she would find out what the problem was. In less then a week it was settled we will now be doing our EPO shots at home. Don't think the director of our clinic is to happy we went to the network but hey my husband insurance has given that clinic over 250,000.00 this year alone for me to do his treatments at home, and for that kind of money why should he have to inconvenienced. My suggestion is if you are having any issues or problems at your clinic contact the network. They will work for you to solve the problem.
-
Vcarmody I am so glad that it worked out for your husband. I know that we all rant about the system being broken, and well, it is... BUT there is an even bigger problem out there, lack of communication. Almost ALL dialysis units in the United States have to abide by the Medicare Conditions of Coverage (CfC's)* (link below) and, the problem is, people don't know about this. Sadly, the majority of people on dialysis are NOT on the web and they are the ones who need the information the most.
I have written a lot about advocacy, I was put in a position where I was all alone on dialysis, and I had to fight for what was my right. After I won that battle, I realized that I had a responsibility to tell everyone that I came into contact with that there are options and there is an over-site system in place (the Networks), and if we need it, we should have access to it. There is a lot of ignorance out there on both sides, provider and patient. The more we spread the word, they better it will be for ALL of us, and those who join our ranks in the future.
For everyone, I think that it would be best to treat your providers not as the enemy, but as people who are ignorant and need to be educated. We need to change our expectations, and realize that there are flaws everywhere (and we see some huge life threatening flaws in the provision of dialysis every day). If the don't want to learn or resist what is best for you, well, then, find out why then try to fix it, like you did. Your simple act of fighting for what is best for your husband paved the way for others to inject EPO at home.
Contrary to the Supreme Court's Opinion, corporations are not people, and the people who work at dialysis units should be in a care-giving profession to give care, if they're not and they don't want to learn, well, then they need a career change. Once we educate the people who work for corporations as to what "Best Practices" are (in your case, administering EPO at home), then we may have a chance at making the corporations see us as people rather than profit. Sure, they already know that the government and their shareholders are watching them, but now, they are finding out that their patients are watching them too. Like a system of checks and balances, we can make this work. It just won't be easy. I feel like each of us takes on a different aspect of this battle for change, some take on policies and legislation; others write and speak to as many people as possible; and still some just do the best that they can making sure that they are given optimal care, that in its-self shows providers that people can be engaged and healthier - that fights the stereotype of the mythical "non-compliant patient".
Tell your unit's employees what care you need, and work with them. That will foster a better relationship going forward. Dialysis is chronic, much like an arranged marriage - you don't have any say in the matter, but you are stuck with that partner until you either grow and adapt with them, you die, or you start court proceedings. I am all about mediation these days, court is long, drawn-out and expensive. The networks can be a divorce mediator, or a counseling session and if it is really bad, they will work with the state health department and try to put the facility's house in order - if not, the State will pull the plug.
The sad fact is, we need dialysis units, our numbers are growing every day. We need to identify the problems and make the units better. It would be a Pyrrhic victory to close the units. We need more home programs (so let's start asking about it); we need more in-center nocturnal units; we need to educate the staff about us as a patient population. We are individuals who need individual care, and we need to be willing to take responsibility in our care.
Vcarmody, yours is a perfect example of rehabilitating your unit. You saw a problem, addressed it with the unit, and when the unit didn't respond in the correct, healthier therapy that your husband deserves, you went above their heads and they were put on the right track. I wish I had known about this process when I first started dialysis - I saw the problems, and I just let it slide. Every patient in my old unit suffered due to bad practices, and DaVita with their bad practices and management just kept on letting the unit slide into the ground, until we were left with 9 people with Hep C, and when it closed, hundreds left without a dialysis unit in NYC.
They system can be fixed, and taking steps like the one you did is a step in the right direction.
From: https://www.cms.gov/CFCsAndCoPs/13_ESRD.asp (https://www.cms.gov/CFCsAndCoPs/13_ESRD.asp)
* Summary of the Conditions for Coverage: [Bolding my emphasis - now we need to enforce these rules!]
SUMMARY: This rule finalizes the February 4, 2005 proposed rule entitled ‘‘Medicare Program; Conditions for Coverage for End-Stage Renal Disease Facilities.’’ It establishes new conditions for coverage that dialysis facilities must meet to be certified under the Medicare program. This final rule focuses on the patient and the results of care provided to the patient, establishes performance expectations for facilities, encourages patients to participate in their plan of care and treatment, eliminates many procedural requirements from the previous conditions for coverage, preserves strong process measures when necessary to promote meaningful patient safety, well-being, and continuous quality improvement. This final rule reflects the advances in dialysis technology and standard care practices since the requirements were last revised in their entirety in 1976.
-
@vcarmoody, Insurance still has to pay the clinic when everything is being done from home? Why?