Response to CMS
Joined: 24 Apr 2003
Posts: 1
PostPosted: Thu Apr 24, 2003 11:22 pm Post subject: Cms wants to change the rules.
Yesterday I got a letter from the Networks boss. I am through begging as CMS is sanctioning this insanity and are well aware of what is going on. They now are wanting the rules of advocacy to change,and let it go back underground. We need to get the word out. Below is my response.<
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>Ida,<
> <
>After receiving your letter about the fact that "you recognize my frustrations with the ESRD Networks". I do know that you discussed<
>according to your letter ,and the phone call that I had received in the past about a ruling on the role and legality of the advocate that has been<
>in the ESRD Regulations. When I asked Ms. Payne what it meant to her,since this government had put in in until someone tried to use it. This<
>has been a stalling issue that the ESRD Network is infamous for. Rules of engagement change at the whim of the Network and are sanctioned<
>by the government. Rules have never been honored as I will give you examples of shortly. <
> <
>First of all this clinic has a history of harassment and intimidation that is well document. One patient in November of 2000,was dumped and told<
>not to return from vacation to her daughters,even though every year her vacation is the same time and length. They gave her chair away and<
>told her to find somewhere in that state. This meant that she had to move if she wanted to live. What did the Network do for xxxx, nothing and<
>sent a letter stating there was nothing they could do. We got involved and finally got her readmitted to this unit. This is the same unit that<
>Kathy came from. You stated that I was advocating for medical issues and Ms. Payne talked to the doctor and guess that I need to be<
>told that Kathy had multiple health issues. However, as I told Ms.Payne in our phone conversation, this is not about health issues, they never<
>honored the right to advocate,and Kathy was intimidated and harassed the last months of her life, with no let up from her doctors. You yourself<
>Ida have the correspondence asking them to stop harassing and threatening to dump her. This was not about medical,so lets not confuse the<
>real issue. This is another patient that has had her rights violated until she died. Dr. Ramero Valdez wrote them and stated that they were to<
>honor the advocacy. You were sent copies of the letters,and can see that it was never honored. Now I go back to the Network and have Rev<
>Harris of National Action Network on the other line. To get some sanity in this clear cut violation on what the Network stated. Ms. Glenda<
>Halbert screamed in the phone, just what is it that you want....then she decides to ask for what an advocate is. This has been pulled also in<
>Baton Rouge,La.It clearly is dragging ones foot and any way you put it, they never backed up Dr. Valdez. This is the only time that the<
>Network has not fought to do the opposite and actually doing what they are set up to do,only now once again what is an advocate.I filed a<
>complaint against the doctors not honoring and nothing done,dismissed and closed. The complaints are eye opening on what these patients have had to live<
>through,and still are, even I was threatened. <
> <
>Now lets talk about Baton Rouge,La. The wife of the patient went to the Network and for 3 weeks heard nothing,not even a letter of<
>acknowledgment on the complaint. This complaint was one that her husband was being dumped and they had to find a place to dialize. Crime?<
>None, as the clinic had made up charges that workers have signed depositions for an attorney. Did the Network help? They got involved when<
>they found out (Patrick) we were involved and asked what an advocate was,and then we had someone call in a State Inspection and the<
>Network put this clinic on EPO management,only the clinic had none. They werent buying it. Now the clinic closed down and the patients sent<
>elsewhere. Were charges
ought against the doctors? I am sure that they just open up under a new name and start over. I am still waiting for<
>that definition of advocacy.<
> <
>Now lets discuss David Hawkins who was dumped and no one stepped in to help him. The patient had mental problems and the medication was<
>dialized out. So let him die as he wasnt worth the money. Now the clinic can say what ever they want about a patient as the clinics are the only<
>ones with the paper work. The Network told the lawyer, that there was nothing they could do. This lawyer was going to file suit against the<
>Network and CMS hired an attorney to fight the lawyer and defend the actions of the Network. Great for the industry, not so for David. His<
>death was sanctioned by the government.<
> <
>I keep begging and pleading with you Ida as with others in CMS,to stop this insanity from happening. Maybe I am not begging hard enough,<
>maybe you dont see what self policing of this Network is causing harm to the patients. They clearly do not give out the names of who is on<
>their board, and when they are forced too,they then give names and not who they are affiliated with. How can one protect oneself? Who is<
>going to protect those with no voice. Now CMS wants to change the regulations,and let it go back underground and the slaughter once again<
>is secret. Well, I realize that CMS does understand,they have always sanctioned and change the verbage that the patient is wrong as well as<
>myself. I am the enemy to this organization and treated as such. The sad part is that I get it done, and I dont charge anything. I keep hoping Ida<
>that you would see what was happening,but I am afraid CMS is aware and this group of patients are unworthy of protection and no<
>accountability will come from CMS. The information has always been there. Never once has anyone from CMS asked for our input and what we<
>feel is happening. You clearly know what is happening. I am not going away, the story will get out as I see the only choice is to have 'Civil<
>Disobedience and help from some other organizations who have the health and stanima to fight for those who are to ill to fight. As our attorney<
>says,that it isnt a definition that your asking for,but a new regulation to protect those who have caused many deaths and abuses. I am begging<
>for sanity,only the government has not to date recognized fairness or neutrality when it concerns this industry.<
> <
>I see the writing, and it saddens me that after 5 years the Network still has not improved,they know the government and you will protect their<
>actions and change the words to fit the situation. Democracy, not in dialysis.I will not stop and will continue to either make them accountable<
>with lawsuits,and I still will advocate. If the rules change,this means we only picket these clinics with the press. This is the American way, when<
>the government forgets who they are to protect. Even CMS knows this group of patients are sold for $100,000.00 a piece to the non-profits,and<
>are commodities to the stock market. To know that patients dont have rights as slaves dont. It appears that the Network according to our<
>records, dont protect the minorities in this industry. This is hard even to write,but they are allowed freedoms under the constitution. Stop this insanity,you know its wrong.I wont beg anymore.<
> <
>Arlene Mullin<
> <
>cc blind<
><
>----This affects each patient in the dialysis industry. I felt that CMS didnt really understand what was happening,they do and have. Our attorney states that the writing is on the wall and the Regs will change overnight. Too bad they dont work this fast on the Standards of Care. Could it be that they were not intended. This should make you angry and realize that this behavior has been allowed and they are in full knowledge of this. We need to get those flyers out and I personally will do what it takes to stop this insanity towards the patients. As I have stated on numerous occasions,the Network is not your friend they are the industry,and CMS is protecting the industry with full awareness. I really was naive to think that they just didnt get it. They do, and arent going to change. This leaves every patient at risk. You had no patient rights before us, now they will only silence it more. We still will advocate for patients and this will not change anything. Lawsuits and advocating outside a unit if need be. <
> Edited by: realdialysisethics at: 4/25/03 3:41:00 am<
>
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very scarey
Joined: 25 Apr 2003
Posts: 1
PostPosted: Fri Apr 25, 2003 4:06 am Post subject: to see
our govt. is crooked. Who is ida?
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realdialysisethics
Joined:
06 Jan 2003
Posts: 41
PostPosted: Fri Apr 25, 2003 5:03 am Post subject: Re: to see
Ida is the ESRD Network boss.
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Arlene
Site Admin
Joined: 02 Feb 2003
Posts: 49
PostPosted: Sat Apr 26, 2003 6:10 am Post subject: On the advocacy issues
Received a call yesterday and was not at home. It appears that they are going to cut through the red tape and put the advocate role back in. It appears that this stalling mechanism of the Networks wont work anymore. When a patient is being dumped and the ESRD Network doesnt answer the patient for 3 weeks,then we notify them of this issue. The patient only has 1 week left,then lets stall for more time and find out what it is after being in the regulations for over 30 years. Thank goodness we placed the patient in another unit,as we dont have their definition yet.....takes
ains!<
><
>We will see. But this is at least an attempt to be fair from CMS.<
>
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FYI
Joined: 15 Feb 2003
Posts: 72
PostPosted: Sat May 03, 2003 6:36 am Post subject: Patient Advocates
CMS was sent a pile of patient advocate information. It happens to be a Federal Law, and it still amazes me that the ESRD didnt know what one was.So the head of the ESRD NETWORK CMS now has plenty of information on what an advocate is. Not to recognize it in this industry is only adding and proving that the patients have no rights.<
><
>It appears that according to our attorney's that this is an attempt of the ESRD NETWORK to take away this right of all patients in the United States.<
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>It was first used with David Hawkins in Michigan, where the ESRD NETWORK denied Davids right to have us advocate witht the attorney.<
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>Secondly it was used in Baton Rouge La when the ESRD NETWORK never responded to the patient for 3 weeks as the patient was being dumped. (Now you are suppose to have only 30 days if they give you that). That left him with a week and they responded with" What is a patient Advocate. We got the patient put in another clinic. We are still waiting for their ruling.<
><
>Third, is most recent with Kathy's death. The first letter sent to the physician stated that they needed to honor this right. The clinic never responded,even after verbally and in written form. Now the Exective director calls me and wants to have the definition of what an advocate is. Kathy is being denied her rights and they want a definition.<
><
>It clearly appears that CMS as well as the ESRD NETWORK screwed up on this one. It clearly shows a pattern of not validating what an advocate, when it is FEDERAL LAW. CMS should of known this as well as the ESRD NETWORK. It clearly was only for stalling and allowing the patient to be at risk.<
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>This very same clinic on the 2567's state the following 1 1/2 years after we turned them in for violation of patients rights/ This is the actual 2567 on the following survey form;<
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>V227 405.2138 (e) GRIEVANCE MECHANISM<
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>All patients are encouraged and assisted to understand and exercise their rights. Grievances and recommended changes in policies and services may be addressed to facility staff, administration, the network organization,and agencies or regulatroy representative of the patients's choice,without fear of discrimination or reprisal.<
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>THIS STANDARD WAS NOT MET AS EVIDENCED BY:<
>Based on reviews of the dialysis facility's complaint procedure and intervies with responsible staff,it was determined that the facility did not write,adopt and implement a policy and procedure to ensure the resolution of patient complaints. the policy and procedure did not specify that complaint relevant to the quality of care and services must be investigated and resolved within 30 days calender days. The dialysi center had no mechanism fo the identification of each patient or family complaing,the result of the complaint investigation adn the documentation of the resolution.<
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>This is the clinics response on the deficiency:<
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>A grievance procedure will be immediately implemented by the Director of Nursing and the Office Manager. this shall include a formalized format which shall include resolving and/or addressing patient/family member or staff complaint withing thirty days of the complaint. The complaint investigation will include steps take to resolve or address the complaint and will be presented by the DON in th monthly Quality Assurance meeting. will be in a written format.<
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>This clearly makes them accountable for denying Kathy's right.<
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>This report is dated 11/01/01<
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>It appears that this needs to be stopped and CMS needs to honor the rule of advocacy of all patients. It is a Federal Law and most states have a law also. <
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Letter sent to CMS
Joined: 03 May 2003
Posts: 1
PostPosted: Sat May 03, 2003 6:52 am Post subject: Faxed this letter and the patients rights of advocacy.
Dear Ida,<
><
>Faxed a letter earlier today on a ****. Our attorney has downloaded the following infomation to help you "cut" through the red tape. It is about the right for patients to have a choice of advocates, be it a friend,relative or anyone that they choose to help out and be a voice.<
><
>It has been a puzzle to our attorney that this has been on the ESRD Regulations for over 30 years and it has caused harm to patients waiting for the decision on what an "advocate" is when it is a Federal Law.The ESRD Network has used this as a stalling factor,and the patient in Baton Rouge,LA,and Kathy lost this very basic right as a citizen of our nation. It is simply a law that the ESRD Network should of realized was on the books. We are stumped at what the "red tape" is when ones rights are being violated. Hopefully this law will be recognized as it is a Federal Statute,and to protect the patients. This field of medicine has forgotten that these patients have rights.<
><
>We are waiting for this to be corrected,and the Federal laws that do include dialysis patients. This a right and much time has been lost due to the stalling of wanting to know what one is. Hopefully Ida this information will help you with whatever it is that is holding up this basice human right that every other patient seems to enjoy. Dialysis patients are citizens too! <
><
>These are just a few of the proof sources for patient rights and advocacy's that exist in our current laws. should the question arise again,pertaining to the definition of an advocate,this should more than answers, any question they might have. Thereby eliminating any delay in transferring patients requests to be honored.<
><
>Thank you in advance and hope this helps you.<
>Sincerely<
><
>Arlene Mullin<
>dialysisethics.org<
>Sent facsimile <
>
