Chapter 13: Getting Help With Problems

1.  Using the ombudsman.

If you have not gotten a satisfactory response from the nursing home, you can get help.  There is a nursing home resident ombudsman (advocate) assigned to every nursing home in the state.  The phone number of the ombudsman for your area is supposed to be posted on every floor of the nursing home.  If it is not, you can call find it here.  Or you can call 1-800-252-8966 to get the phone number of the ombudsman for your area. 

The ombudsman is required to keep conversations with residents and their representatives confidential, unless the resident or resident's representative has given permission to follow up on what has been said.  So you should be able to speak in confidence to the ombudsman, if you are not sure what to do about a problem.  (Although federal law says they are not supposed to, we are aware that some ombudsmen have filed complaints about physical abuse with the Department of Public Health without the resident’s or representative’s permission.  They have done this when they are afraid for the safety of other residents.)  

If you want the ombudsman to pursue a complaint, the first thing the ombudsman is likely to do is to talk with the resident whose care you are concerned about.  If that resident also has a complaint or issue she wants help with, the ombudsman will investigate and then, in most cases, try to resolve the matter with the nursing home staff.  Ombudsmen are sometimes more successful in resolving issues than families are by themselves.  If they are not successful, or if the complaint is not the kind that can be mediated, they may file a complaint with the Illinois Department of Public Health. 

The ombudsman is supposed to advocate for a resident, not for the resident’s family.  This usually means that she will try to achieve what the resident says she wants.  So if you want something done for your mother, but your mother says she wants something else, it is what your mother says that will guide the ombudsman.  Because of confidentiality requirements, unless your mother gives the ombudsman permission to tell you what she told the ombudsman, you will not know, for example, that your mother disagrees with you about what kind of care she should be getting.  Similarly, the ombudsman will not file a complaint with the Department of Public Health unless your mother gives her permission to do so.

There is an exception to the requirement that the ombudsmen be guided by the instructions of the resident.  If a person is not capable of saying what she wants -- this is not the same as being legally incompetent -- an ombudsman is supposed to assume that the resident does not want to be abused or neglected.  So if she cannot say that she wants help eating, or to be repositioned regularly to prevent bedsores, or that she wants the medical care she needs, the ombudsman can nevertheless advocate for her getting good care.  If necessary, she can file a complaint with the Department of Public Health to help get that care.


2.  Filing a complaint about nursing home care. 

The Illinois Department of Public Health regulates all Illinois nursing homes.  It is required to investigate complaints about whether the care in nursing home meets state and federal standards.

You can file a complaint with the Illinois Department of Public Health by calling 1-800-252-4343, the “nursing home complaint hotline.”  When you file a complaint, ask that the surveyor (inspector) call you before (s)he goes out to investigate the complaint.  This is so you can make sure the surveyor knows exactly what your complaint is.  You should also insist that the person at the hotline who writes down your complaint, also write down the names and phone numbers of any witnesses who can confirm what you are saying, and when they can be reached.  If you have pictures, say so.  You can also mail or email a copy of your complaint to the Department, along with any relevant pictures..

Although somebody will always answer the Public Health hotline, no matter what the time or day, and they are supposed to take complaints at all times, the staff may not be enthusiastic about taking complaints on weekends.  Unless it is urgent, you may want to avoid an argument by waiting until Monday to file complaints about problems that come up over the weekend.  Do not delay filing a complaint about any condition that puts a resident at risk of injury.

Surveyors are not supposed to tell the nursing home who files a complaint.  Sometimes they do, anyway.  If the Department of Public Health cites the nursing home for a violation as a result of a complaint, and the nursing home appeals, they are allowed to find out who filed the complaint.  You will be told if the nursing home appeals, and given the chance to withdraw the complaint. 

You can file a complaint anonymously, if you want, but doing so is usually pointless unless abuse, neglect or potential danger to residents is blatantly obvious.  If you are at all active and assertive in dealing with the nursing home staff, they will usually figure out or assume who it was that filed the complaint.  Filing anonymously makes it less likely that the complaint will be investigated adequately.  And understand: because there are not enough nursing home surveyors, most complaints are not investigated adequately. 


3.  The complaint investigation.

You have a right to go with the surveyor to the nursing home to observe the investigation of your complaint.  If you want to do this, you should tell the hotline employee who is writing down your complaint to write down that you want to go out with the surveyor.   Because the surveyor usually will not call you until just before (s)he goes to the nursing home, in practice almost no complainant gets to watch a complaint investigation.

Complaints indicating a resident’s life or safety is in “imminent danger” must be investigated within 24 hours.  Other complaints of abuse are neglect must be investigated within 7 days.   All other complaints are required to be investigated within 30 days.  Few complaints are investigated on weekends or evenings, even complaints about understaffing, abuse or neglect that has happened or repeatedly happens on weekends or evening.

To decide how quickly Public Health will investigate a complaint, the hotline staff is supposed to ask you if you think a resident is in immediate danger from continuing abuse or neglect.  The staff sometimes do not ask this question.  If you believe your mother or another resident is in danger, it is important that you bring up the subject and make sure they write down that you think a resident is in danger.  

We wish we could assure you that your complaint will be investigated thoroughly and evaluated fairly.  Our experience is that this is not true.  Surveyors often do not call the witnesses you tell them about, for example.  They generally believe whatever the nursing home staff tell them, rather than anything residents or family members tell them.  If they do not see it themselves, or the staff does not admit that something happened, as far as the Department of Public Health is concerned, it never happened. 


4.  After the investigation.

You will get a written notice from the Department of Public Health telling you the result of the complaint investigation.  If the Department finds a violation of state or federal law, you can get the details from Public Health, but the easiest way to see exactly what was found, and the penalty, if any, is at the nursing home.  Every nursing homes is required to keep, and make available to the public, the last five years of every complaint, every survey (inspection,) every notice of violation, every plan of correction filed with the Department of Public Health.  You have a right to see these documents if you ask.  They are usually either at the front desk or in the administrator’s office.  The latest survey results are supposed to be posted in a public place, although some nursing homes do not do this.


5.  Complaints about medical professionals.

The Department of Public Health has no authority to discipline health care professionals.  This power is given to the Illinois Department of Financial and Professional Regulation, which licenses all health care professionals, including doctors, nurses and nursing home administrators.  The Department of Public Health is required to refer to Professional Regulation for further investigation, any licensed professional who Public Health thinks may have violated state requirements about nursing home care.  Public Health refers several hundred such cases every year.  

Professional Regulation rarely takes action against health professionals for neglecting nursing home residents.  If you want to try, their website tells you how to file a complaint about a health care professional online or in writing.  


6.  Trying to even the odds.

Some residents and families who are unable to resolve a complaint themselves, find they benefit from asking the ombudsman for help in filing a complaint.  Their abilities and enthusiasm vary, but the ombudsmen may be better at documenting a complaint and getting Public Health to consider it, than you are.  As Public Health staff get used to dealing with the ombudsmen, they are sometimes willing to believe what the ombudsmen say, even when they will not believe residents or families.

The Illinois Department of Public Health sometimes gets pressure from state legislators after it finds violations in a particular nursing home, not to force the home to correct violations, or to give it more time to do so.  Many legislators have cosy relationships with the nursing home industry; other wish not to offend rich and powerful constituents.  If you have filed a complaint with the Illinois Department of Public Health about your mother’s nursing home care, you should make sure your state senator and state representative know about the poor care she is getting.  Ask for their help in getting Public Health to take her problem seriously.  If Public Health or Professional Regulation has been useless, tell your legislators and ask for their help.  The system that protects nursing home owners from what should be the consequences of poor care, will not change so long as legislators feel pressure only from owners, and not from residents and their families.  


7.  Don’t mourn: organize.

If your mother is having serious problems with her nursing home care, she is probably not alone.  If the basic problem is that the home does not have enough staff or enough trained staff, she certainly is not alone.

The nursing home administrator or owner may not be impressed by the complaints of a single resident.  If resolving those complaints is going to cost money -- say by adding additional staff -- they may decide they would rather lose the income from the resident than incur the additional cost of hiring more staff.  

While they may be willing to lose one resident, however, they are unlikely to be willing to lose ten or twenty.  For this reason, the most effective way of improving the care your mother is getting, is by organizing family members of many residents into a family council which can present complaints to the facility and demand action in a way the administrator or owner cannot afford to ignore.  A family council also will get more respect and attention from your state legislators than a will a single resident or family.  ICBC can help you organize a family council in your nursing home.  

The nursing home is required to give the family council room to meet, although sometimes  families are more comfortable meeting elsewhere.  In the long run, a well-functioning family council may be the best way to see that your mother, and all the residents, will be cared for properly.  It is the families of residents, after all, who are there daily, and know how the facility works: not the state and not the ombudsman

Nursing home administrators and owners often tell families that they cannot add more staff, improve the food, or fix up the building because they cannot afford the expense.  If your mother’s nursing home is in the Medicaid program, you can see if this is true.  All nursing homes in the Medicaid program are required to file annual “cost reports” with the Illinois Department of Healthcare and Family Services.  Cost reports show the home’s income and expenses, and any profit made by its owner.  

We tell you more about cost reports here

All the ombudsman programs have volunteers whom they train about residents’ rights, and who visit nursing homes on behalf of the local ombudsman program.  Relatives and friends of nursing home residents and former residents are some of the most dedicated and able ombudsman volunteers.  You can talk to your local ombudsman about becoming an ombudsman volunteer. 

The best guarantee that your mother is getting good care, is that all residents are getting good care.


8.  Deciding if your mother should move out. 

If your mother is having serious problems with her nursing home care,  you have to decide if it is best for her to move.  There is no single right answer to this question.

Depending on her health and family circumstances, this may be the time to ask your local area on aging for help in planning for her to return home or move in with her family.  You can get the phone number here or by calling 1-800-252-8966.

Many nursing home residents have used up most or all of their savings paying for nursing home care.  Without substantial savings, their choice of nursing homes, if they want to move, will be limited.  This is because some nursing homes will not accept new residents who will not be paying privately for some period of time.  Many residents and their families believe that their limited finances mean that they will not be able to find another nursing home that is any better than the one they are in.  Even if she has substantial savings, so many nursing homes are understaffed, there is a good chance that the care wherever your mother might move would be no better than where she is now.  As nursing homes increase their staffing (because of nursing home reform changes,) moving to a better-staffed nursing home should become a more realistic possibility.

However: it may not be good for your mother to move.  She may have friends and good relationships with other residents and staff, and a sense of familiarity and comfort with the nursing home routine. Leaving may be harder on her than staying.  In medical terms , this is the phenomenon of “transfer  trauma.”  What this means is that some nursing home residents who move out have an increased rate of illness and death related to the move.  “Transfer trauma” has been documented in hasty moves for which the resident is not prepared, and for residents with dementia who cannot understand what is happening to them.

On the other hand: if your mother is being abused, it is hard to believe that any place she could move would be worse for her than where she is now.  And moving may help her feel safe instead of scared.  Living in fear is an intolerable situation.