Ila Swan: patient advocate


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10 Essential Traits of Real Patient Advocacy Groups

(How to Tell the Difference Between Real Advocates
And Industry Front Organizations!)

by Ron Panzer
President of Hospice Patients Alliance.

  1. Acknowledge Problems are Common
  2. Willingness to Listen and Believe
  3. Provide Full Information
    re: Standards of Care and Regulations
  4. Do Not Allow Industry Agencies or Groups as Members
  5. Will Admit There Are Illegal Activities in Health Care Agencies
  6. Won't Just Tell You to Work It Out with Agency
    (You already tried that or you wouldn't need help!)
  7. Don't Accept Donations from the Health Care Industry
  8. Willingness to Help You File Complaint
    With Government if Appropriate
  9. Encourage You to Seek Expert Legal Counsel When Needed
  10. Willing to Publicly Speak Out Against Abuses in Health Care




There are many organizations that represent themselves as "patient advocacy" groups. Spokesmen for these groups say that they promote quality health care and they are there to help you. How do you know the authentic patient advocate from the industry front organization? How would you know if they will actually help you or simply waste your time or worse? If you don't find the following 10 characteristics in that organization, run the other way, because they not only will not help you, but they may also hamper your efforts to get justice or the care the patient needs.

Patient advocacy would not be necessary if the message of the health care industry is accurate. Health care industry representatives would have the public believe that there are no serious problems stemming from the highest level of administration in health care agencies. They blame problems on employees and on lack of funding. At the same time, top administrators are paid in the millions of dollars or hundreds of thousands of dollars. At the same time, employees toil in great distress in under staffed facilities, shouldering a burden or case load that is beyond one person's abilities. Administrators of agencies consciously choose to under staff facilities or services so that profit is maximized for those at the top or shareholders in the for-profit health care corporations.

Mere employees who make up the backbone of our health care network cry out for relief and for additional workers to be hired, so that top quality care can be provided. We do not lack technology or knowledge. We do not lack standards of care. Our health care system lacks integrity in some health care administrations and dedication to the highest standards embodied in our laws and regulations. There is, unfortunately, a criminal element which has entered into health care ... a criminal element that seeks out higher revenue and pay for those at the top, a criminal element that has been repeatedly charged and convicted in federal proceedings as well as state proceedings.

Health care fraud in the many millions of dollars is occurring on a daily basis. The United States General Accounting Office and Office of Inspector General have confirmed this repeatedly. Health care industry representatives do not admit to these crimes. They minimize the damage that is caused. They scapegoat innocent employees and demand more money which they misuse and allocate to their own chief executives rather than for care of the patients who desperately need improved care.

The industry representatives and lobbying groups have a legitimate function in helping agencies to better administer their agencies, work together to promote improvements in the industry and to communicate with the public as well as government officials. Industry groups perform valuable research and provide invaluable assistance in innumerable ways to health care administrators. They are not patient advocates, however some of these organizations would like the public to believe that they are patient advocates.

  1. Acknowledge Problems are Common
    (Don't Pretend that Problems are Rare)

    Real patient advocacy groups not only admit that there are serious problems, but are at the front informing the public about the reality in health care. Those who have not had the misfortune to experience such outrageous violations of their trust do not understand the seriousness of the crisis in health care confronting us. It is only when it is too late, that the naive understand, and then find themselves powerless to help their loved ones: loved ones who are victims of a system that does little to correct problems in a timely manner or ever.

    Government protections are woefully inadequate, and government enforcement and prosecution often actually reward the criminal elements in health care by recouping only a part of millions stolen from our national and state health care systems. When government settlement agreements allow criminals in health care to keep millions of dollars while only repaying part of the total taken, the government loudly proclaims that they recaptured millions of dollars. In these settlement agreements, the government sends a message to the criminal element that health care fraud pays ... and pays handsomely. Those criminals in health care who are so rewarded, then in turn handsomely reward the politicians and candidates for office by sending donations regularly ... donations which are in effect "protection money" to keep the government "off their backs."

    Why do we hear about many investigations begun and corporations being charged, but see so few convictions of the criminals at the top? The government fails to explain to the public that they let the criminals keep millions of dollars. What the health care industry representatives fail to proclaim is that those who perpetrate health care fraud are rolling in millions of dollars, even while basic services are cut and facilities are under staffed.

    There would be no shortage of nurses or doctors if nurses or doctors were allowed to do their jobs in an honorable and effective manner. Anyone who has worked in health care knows the limitations that some agency administrations place on the employees by creating environments where top quality care is not possible, where employees with integrity are harassed for trying to protect patients, where those who continue to protest such conditions are summarily fired and blackballed. Many physicians, nurses and other health care workers are telling their children and friends that this is no longer a field where one can work unhampered by corrupt influences from HMOs, managed care and/or corrupt administrative policies at the workplace. New recruits are being discouraged from entering, not because the field does not have its rewards and merit, but because the mission is being undercut and betrayed by those in power.

    Real patient advocacy groups will acknowledge that problems in health care exist, ... that they are extremely common ... that health care agencies are not "immune" to the problems that occur in any industry. Patient advocates will admit that serious problems exist and that they are working to correct these problems. They are willing to condemn obvious abuses of patients and their families. They will not automatically seek a scapegoat in the individual employee, but see how the administration or owners may have created the environment in which abuse or neglect is likely to occur.

    Fake groups which are fronts for the health care industry will state that such problems are rare. They will never publicly condemn the abuses within the agencies themselves. Often fake front organizations will quickly seek to scapegoat or blame the nurse, physician or other worker, while stating that the industry itself remains free of abuse or criminal violations of the laws.

  2. Willingness to Listen

    Real patient advocacy groups will listen to you and your account of what happened or is happening. They will be willing to discuss the details and go over the standards of care that apply in each situation. While they are not government inspection agencies, they can tell you where the violations may be and clarify the situation to you. While a real patient advocacy group will also provide basic facts and encourage communication with the agency (if that has not happened completely), they will go further and work with you step by step. If you need support at the moment, that is what they will provide. If you need facts to strengthen your position when communicating with an agency, that will be provided.

    Front organizations are likely to give you concocted "lines" that belittle the authenticity of your account. They often will tell you that you are simply being "emotional," having trouble "grieving" or that you don't know what you are talking about. It is common for false groups to condescendingly suggest that what you are reporting is not accurate or that you only need "communicate" more with the agency involved. These industry front groups do not admit that the agency itself may intentionally be under staffing or violating standards of care.

    When patients or families contact a fake industry front group, they will be told some basic facts and then redirected back to the agency involved. Fake groups will often say that "this is all we can provide" and then leave you hanging with no resolution.

    Real advocacy groups will encourage you to take whatever action is necessary to access all the resources available to you to correct the situation.

  3. Provide Full Information
    re: Standards of Care and Regulations

    Real patient advocacy groups will provide you with all the information they can about what the standards of care are for the health care setting involved. They will not be vague, but rather will provide you with a way of getting your hands on the actual regulations and laws governing the provision of health care for that particular agency. Some will post the regulations, some will tell you where you can get them. But real advocates will not dissuade you from looking at the regulations and they will encourage you to become more informed.

    Real patient advocacy groups will explain the standards of care, what services should be provided and will readily explain what went wrong if an agency did not provide appropriate care or failed to provide needed services. Real advocates will mention your right to file a complaint with not only the state, but also the federal Office of Inspector General, US Attorney's Office, FBI, DEA, Joint Commission on Accreditation of Health Care Organizations (if the agency is JCAHO accredited) and any other government department that enforces laws or standards of care.

    Front groups will almost never tell you to contact the police, unless it is to scapegoat one particular employee rather than criminal administrators in the agency. Front organizations would never tell you about "qui tam" lawsuits in which you can report fraud to the federal government and get rewarded with a percentage of the money returned to the government from fraudulent billings.

    Industry front organizations will make you question your own instincts and common sense. They will use clever lines to mislead you about the obvious. They will not validate your own clear perception about what has occurred.

  4. Do Not Allow Industry Agencies or Groups as Members

    Real patient advocacy groups will never allow the industry being monitored to become members or otherwise compromise the integrity of the advocacy organization. They will not allow industry representatives to be on their board of directors.

    Industry "front" organizations will loudly proclaim that they promote better care, but their membership includes industry agencies, lobbying groups, associations on both a local, state or national level. Front organizations are sometimes very large, and therefore some individuals are impressed that what they say is "authoritative" or accurate. Being large simply means that the industry is using the front organization for their PR purposes. These front groups may be extremely powerful, very well funded and consulted by the media for "official" statements about their industry. However, they are not "official" nor accurate in their reporting about the condition of our health care system. They deny the obvious and protect the agencies that make up their membership.

    State or national associations of hospitals, nursing homes or hospices are NOT advocacy groups. Their membership is made up of the agencies themselves who may be committing the violations. These associations accept membership dues from the agencies themselves. They will never embarass the agencies by publicly broadcasting the truth. They will use all their public relations expertise for "damage control" and vigorously deny any wrongdoing in the industry involved.

    Industry front organizations that pretend to promote "quality" care will claim that any reports of crimes or violations in the industry are "twisted" distortions of the truth and "exaggerations." They will claim that "everything is under control" and that the industry performs "to the highest standards." These front organizations claim that if there were violations, the states would rush right in to correct the situation and that the public should be assured that quality of care is not being compromised. Nothing could be further from the truth.

    In every state, there is a shocking slowness to respond to serious complaints about the quality of patient care (even life-threatening situations). Criminal acts of abuse, neglect and even murder are NOT promptly or properly investigated. State inspection agencies routinely slap the industries on the wrist with a minor citation, and if the crime is very serious, they may give them a minor fine, which is quite often never paid. State attorney generals throughout our nation do NOT routinely go after agencies who do not pay the fines given out for violations.

    Industry front organizations know that they have many politicians, district attorneys and government bureaucrats in their pocket or afraid to act against these powerful lobbies. Money is regularly donated to politicians seeking election or re-election, and that is why real reform has not occurred in the health care industry. The health care industry fraudulently sucks money out of the Medicare and Medicaid systems while politicians get paid protection money so the state or federal government does not go after the real criminals in health care.

    HMOs and industry agencies get rich, paying their executive officers in millions of dollars or many hundreds of thousands of dollars while cutting staffing and services to the most vulnerable of our community: the patients. To see how these organizations donate to the politicians who make laws, see Open's data on federal campaign contributions. You can then search Open's local information for your state and see how much is being donated to your state politicians. It is amazing to see how the money flows in so regularly to the politicians who choose which bills become law in our nation.

    Remember that some government officials can "let it be known" through the "old boy network" that a particular agency is to be handled with "kid gloves" and not cited harshly. Serious investigations of felony heatlh care fraud have mysteriously been shut down with no explanation. The U.S. Justice Department or State Attorney General Offices don't always publicly proclaim why an investigation has been shut down. They may say that there was not sufficient evidence to bring a prosecution case in court, however, even when such statements are made, the victims of the crimes and the whistleblowers who know from the inside what evidence is there, do not take such statements seriously. Often, when there is overwhelming evidence of criminal activity, the heatlh care agency administrators are let off with no criminal charges at all being filed, while the exectives get rewarded with million dollar salaries and benefits.

    One of the things that is most disturbing is the new initiative coming from industry representatives and the state inspection agencies themselves! This is known as the 'partnering' issue. The government, some false patient advocates, and the state oversight agencies, want to sit down and partner with the corporations that run our nation's and states' nursing homes, hospices, hospitals and home health agencies. The naive believe that if the state inspectors and patient advocacy groups "get to know" the corporate executives and reps, explaining what needs to be done to improve care, that progress can be made. State department heads have proclaimed that they do not wish to bring legal action against the corporations, ... that by "working together" time can be saved and real improvements made. Nothing could be further from the truth!

    In Texas, the nursing home industry has recently requested state legislators enact laws which allow state surveyors to come in and show them how to give quality care ... how to help them understand the law. The laws do not take a rocket scientist to interpret. All that is required is to have an administration willing to hire the staff necessary to provide basic care. While industry reps loudly complain about how they just "don't have enough funding" to staff properly, anyone who is objective will see that SOME owners and administrators are paid in hundreds of thousands of dollars, sometimes millions of dollars, driving around in Lincoln, Cadillac, Mercedez Benz automobiles, living in huge mansions or estates and are incredibly wealthy. These are not servants of the needy. They are drains on the health care system and the federal and state health care budgets, as well as private health insurance industry. Administrators and agencies that are ethical do not have the same staffing problems as do the corrupt agencies that are found to be in violation over and over again.

    Health care regulations are not difficult to understand at all. They are very clear and easy to understand, as long as one is thinking about the patients and the provision of health care first and foremost, and not looking to fill one's own pockets first. Health care corporations do not need state surveyors to show them how. The industry knows the laws probably better than anyone else. They also know if the surveyors are in their facilities to 'show them how' they are not in there to write them up. "Fraternizing" with the agency directors only leads the state surveyors/inspectors to be reluctant to cite the agencies. When fewer citations occur, the agency can claim that they have not violated the regulations, which is in fact, not the case.

    Many patient advocates will condemn the state oversight system as being a huge failure, but are reluctant to speak about the failure by police, county district attorneys and state attorneys general to criminally prosecute the owners and operators. Real patient advocates will condemn those police, district attorneys and state attorneys general who fail to prosecute the criminal aguse, neglect, rape and direct harm to our nation's vulnerable patients, in hospices, nursing homes or other agencies. While we have the greatest respect for those government servants that do their job and do it ethically, we have extreme disgust for the government officials who are entrusted with the responsibility of protecting the public, and who betray that trust by cozying up with the white collar criminals who commit health care fraud and other crimes in our nation's health care agencies.

  5. Will Admit There Are Illegal Activities in Health Care Agencies

    Groups that only pretend to be advocates will never admit that agencies have intentionally violated the standards of care. They will almost always repeat that problems are rare and any illegal activity is due to a "bad apple" or employee, not the agency itself.

    Real patient advocacy groups recognize that administrations, boards of directors and executive officers can themselves be the source of violations of standards of care and fraud in health care, that policies which violate the laws can be set and instituted from the board level.

    Real advocates know and will let you know, that it is the agency administration that may intentionally short staff a facility, or under-serve the patients.

  6. Won't Just Tell You to Work It Out with Agency
    (You already tried that or you wouldn't need help!)

    We have gotten complaints from families about organizations that simply tell them to go back to the agency that is refusing to provide care. If the family has already spoken with the agency and spoken with a supervisor or director of the agency, and still appropriate care is not provided, or a problem is not resolved, then the family needs to consider other options. Front organizations for a health care industry will either say that families should contact the agency or contact the state. Front organizations will not encourage families to contact an attorney. In fact, they will often discourage families from getting expert legal counsel.

    They will not suggest families contact medical malpractice attorneys, nor will they tell them to contact attorneys who only work as plaintiffs' attorneys representing the patients and their families. Following the advice of front organizations results in the supreme "runaround" because they tell you to go back to the agency that you already spoke with or contact the state, but never give you the information or resources that could force the agency to provide needed care, admit wrongdoing, or correct the violations occurring. News articles covering health care often refer the public to the state lobbying group or association for the industry, which is like sending victims to the wolf's association to complain about being bitten by wolves. These large industry associations or their members take out large advertisements in the newspapers, TV or radio. Even the media will not bite the hand that feeds it: powerful industry lobbying groups.

  7. Don't Accept Donations from the Health Care Industry

    Real patient advocate organizations do NOT accept donations or funding of ANY kind from the industry that they are monitoring. If conferences are held by a real patient advocacy group, they will not be funded by the health care industry lobbying groups, foundations or agencies. They will not allow meeting rooms or expenses to be paid for by the industry they are monitoring.

    Front organization that accept such tainted donations should be suspect and will not be a reliable advocate for the patient's and family's needs.

  8. Willingness to Help You Get Information Needed
    For Complaint to Government if Appropriate

    Real advocates will help you understand what violations may have occurred, and they will explain the standards of care as they apply to your situation. Advocates will analyze what is occurring or did occur, and will help clarify the separate violations that may have occurred, and will also inform you about how to write an effective complaint. Real patient advocates welcome the regulations and standards of care as the only true protections for patients throughout our nation.

    Agency representatives or their front organizations will not reveal to you the full extent of the regulations and standards of care, and they will complain loudly that the agencies are "burdened" by the regulations. Rogue agencies or lobbying groups will never admit that the regulations don't stop them at all from intentionally violating patient rights to high quality health care and services.

  9. Encourage You to Seek Expert Legal Counsel When Needed

    Real patient advocates recognize that legal action may be the only recourse you have that will effectively assure changes that improve care. Real advocates will not hesitate to encourage you to find expert legal counsel, and they will often provide resources where you can find competent attorneys who will help you.

    Front organizations will discourage legal action. They will say that it is unnecessary, counterproductive and will not help. They know that legal action may be the only thing that will force a rogue agency to comply with the standards of care.

  10. Willing to Publicly Speak Out Against Abuses in Health Care

    Real advocates will speak out publicly about abuse, neglect and exploitation of patients and/or the Medicare, Medicaid or private insurance systems. They are not afraid to evaluate the situation objectively. They are willing to share information about the crimes being committed in the health care industry. The US Office of Inspector General regularly issue notices about licensed corporations or individuals who have been removed from participatory status in Medicare due to criminal activity. Compliance Integrity Agreements are listed with major US health care corporations showing that the US Attorney's office and the US OIG have proved that these corporations committed fraud to the tune of millions and millions of dollars. (See "Largest Nursing Home Chains" from the website of patient advocate Ila Swan.

    Industry front organization leaders may privately admit to abuses in the industry, but they will never publicly admit that there are intentional violations of the standards by agencies themselves. If front organizations admit to wrongdoing, they will always minimize the seriousness and extent of criminal activity in the health care setting.

    Objective analysis of health care shows that there is widespread criminal activity involving major health care fraud wrongly taking millions of dollars from Medicare, Medicaid and private insurance companies.


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Largest Nursing Home Chains Ranked by number of beds as of January 1999 

Ila's List of things families, advocates and volunteers should look for in a nursing home

How to file an appeal when the nursing home over-sight system tells you your complaint is 'unsubstantiated or 'no deficiencies found