Featuring articles and discussion of diverse topics and issues, including:

Disabilities, Home Health Care, Sexual Abuse of Children, and Advocacy.

POOR SERVICE FROM HOME CARE COMPANIES

ON-PAHC (pronounced as On-pawk)- On Patient Advocacy in Home Care

Focus: Patient advocates for reform of the current home care delivery system
and advocacy for better education of home care aides.

What can you do if you receive poor service from a home care company?

BEFORE PROBLEMS START...

BEFORE any problems arise, you need to create a record to help you keep track of dates, times, and who you spoke to on the telephone or in your home.  This record will help if you run into problems later on.

Buy yourself an inexpensive large notebook.   This will be your private notebook.  No one has to see it, or even know you are keeping an ongoing "log" of happenings.  Indeed, at this point (before any problem has arisen), it may be better if no one knows you are keeping a daily log.

When the agency calls to begin service, enter the date in your notebook.  Then, list the full name(s) of the persons who you spoke to and their title (e.g. Director of Nursing; Home Care Nurse).  You may have to ask for their title, and for them to repeat their full name.

When they schedule your first visit, write down the date and time arranged for the visit, and the name of the person who is coming to see you.

On the day of the visit, write the date and time arranged for the visit, THEN write the actual time the person arrived along with the name of the person. 

Discuss with the nurse what jobs your Aide is - and isn't - allowed to do in your care and in your home.  Each company has different policies.  For example, one company might allow Aides to clean the inside of your fridge and defrost/clean the freezer, but other companies forbid these (because Aides have previously "forgotten" to put the food back into the fridge or freezer! - Yes, folks, some of these workers are not very bright).  Almost all companies forbid their employees from moving furniture - what they call "spring-cleaning or like activities" -  my experience is if an Aide does more than take one swipe across the carpet, like one "path" only, the patient is lucky indeed; don't expect it to be a job well done!

Ask how long Aides are allowed for breaks - if they are allowed breaks.  Some States say there are no breaks if the shift is 4 hours or less.  This follows the normal practices of 8 hr. shifts in hospitals, nursing homes or other jobs where workers get a lunch break and *maybe* one or two 15 minute breaks, but NO breaks if those jobs were based on a "4 hour shift" as home care is usually.  ALL companies usually forbid workers from eating at or in a patient's home, and forbid the worker from eating the patient's food or beverages (you are allowed as a patient to offer a beverage, but about half of the workers - in my experience - try to take advantage of the home setting by trying to sneak "time off" to eat.  The problem with this is the workers expect to eat for a half-hour or so, in the patient's home, AND be paid for the time they were eating.  (It is really best to NOT allow workers to eat in your home, even once, because they will make it a habit.  Before you know it, you'll be losing 30-45 minutes of YOUR time EVERY day, which adds up over a 5-day or 7-day week!)

Right after the person leaves, record in your notebook what was important from that visit, along with the name of the person and time they left.  You might write: "Met Nurse Sally Jones, she asked me about my meds. I told her I have high blood pressure; she took my B/P - she said it was 138/88 and I told her that was the same as when my doctor took it.  Ms. Jones listened to me and was nice."  Or -- if your visit did not go as well as this, write what happened and what was said.   

Do the same thing when a new home health aide comes to take care of you.  Things you might include for home health aides are:

• Did the Aide arrive on time?

• Did the Aide come dressed appropriately? Or were they unkempt?  Dirty? Smelly? Too much perfume?  Fingernails too long to do their job?

• Did the Aide ask for breaks they shouldn't get?  Or take more time on breaks?  Write how long they took for each break.

• Did the Aide respond promptly when you called / rang for them?

• Did the Aide speak to you kindly?  or was there some problem? 

• Did the Aide seem to know their job well?  Did they know how to help you?  

• Did the Aide willingly help you with chores or duties? (There are differences among different companies about what Aides are allowed to do, so ask the nurse or office first.)  

• Did the Aide have a nasty attitude?  (non-verbal attitude or verbal)

• Did the Aide make you feel comfortable in your own home?

• Did the Aide act in a way that is unusual?   

• Did the Aide fall asleep on the job?  

• Did the Aide try to use your time by eating, by making personal phone calls either on your home phone OR on their cell phone, or other personal activities?

• Did the Aide repeatedly take or make personal calls on their cell phone?  Cell phones have become a huge problem in the home care setting.  NO Aide should be on their cell phone during YOUR time, except for an emergency.  If the Aide is on the phone a lot, try to write down the times, including the duration of calls if you can.  Many Aides will go to an out-of-the-way room, or to the bathroom - if your Aide is unresponsive to you for long periods of time, suspect cell phone use.  If an Aide asks to use your home phone, have them use the phone closest to you - preferably in the same room - so you can notice if the call is short or long AND possibly notice if they are making a long distance call.

• Did the Aide bring their children with them to work?  Call the office as soon as you see kids in your house!  This is not only a violation of your rights, but you could be held responsible if a child gets hurt on your property - whether inside or outside your house!  No matter how cute the kids are, or how much you love children, immediately tell the Aide that kids cannot be brought to work.  Call the office and ask the Aide to leave - immediately.

• Did the Aide fill out your paperwork honestly and completely?  (NEVER sign a blank time sheet or daily duties paper!  NEVER sign time or duty sheets in advance or to "get ahead" of the current date!  The Aide can simply never come back but claim they did.)  IF there is any inaccuracies on the time / duties sheets for time spent or duties done, do NOT sign them - call the office instead.)

• Did the Aide stay for the entire work shift?  or did they try to leave early?

• Did the Aide follow directions well?  

• Any other comments you have about that Aide on that shift - good and/or bad.

• Immediately report any abusive behavior or speech, or bad attitude that is abusive.  Also immediately report theft or suspected theft or loss.  Check your phone bill to make sure workers are not using your home phone for long distance calls (One patient's Aide made calls to a boyfriend who was in prison.  That Aide put the PATIENT's phone number on the answering machine at the Aide's home, claiming on the recording that the number had been changed - so the patient started getting collect calls from the prison phone every few days.  This is also a good reason to hide /protect your "calling cards" and any other type of charge cards.

GIVE FEEDBACK TO THE HOME HEALTH AIDE

If you do have problems with any Aide, give feedback to the Aide immediately.  Try to speak up at the time a problem arises, and no longer than the next day.   If you are unsure how to say something, think it over.  When you do speak to the Aide, use a pro-active approach that states your needs, wants and what works best for you.   

I would prefer if you would do....

I would like if you would do ___ this way.

We found it works best for me to have ___ done this way.

You do not have to explain your reasons, unless you think it would help make your needs more understandable.  BUT, you do not HAVE to give detailed reasons.

DEALING WITH SEVERE PROBLEMS

Or, ONGOING PROBLEMS - WHAT NEXT

It does not help to "warn" an Aide with statements of "I'll report you to your office."  This kind of approach rarely helps any problem and it can make things worse!  First, it makes the Aide defensive, and then their attitude may become even worse towards you.  Second, with this kind of threat, Aides may try to think of reasons to defend their actions, or even to blame you for their mistakes.  They could even construct lies to tell about YOU in order to avoid looking like they are at fault.

AND, if something is so severe in frequency or in the nature of the problem that it should be reported to the office, no "warning" should be used.  NO patient SHOULD need to advise or teach Home Health Aides in doing their usual and customary jobs, and NO patient should be giving "warnings" on an Aide's poor job skills, lack of education in their usual and customary jobs, or for issues with employee timeliness, attitude, language, or other problems.  See the next steps.

If an Aide's words, actions, or attitude is a problem and you've already tried simple directions and feedback to work out a solution, but these have failed to correct the problem, you should next speak to:

The Aide's Supervisor 

Nurse

(The Nurse may be the Aide's direct Supervisor, in some companies.)

Director of Nursing or Office Manager/Owner

MAKING A COMPLAINT TO THE "OFFICE"

Start with the Aide's direct supervisor.  This supervisor usually can deal with problems like: tardiness; leaving early; scheduling problems; too frequent call-offs; no-shows (not calling off); communication problems; "attitude" problems; not doing duties; not doing duties well; etc.

If that supervisor does not help you - or for issues with an Aide that affect your own health, you can go directly to speaking to your nurse.  Issues that may affect your own health could include not being given the right diet or meals not on time; safety issues; improper body mechanics used by the Aide; not being bathed; any form of "abuse" by the worker.

When you cannot work things out with the Supervisor or the Nurse, or if things do not improve after your first complaint, you can ask to speak with the Director of Nursing or Office Manager/Owner.

With each office person you speak to, describe the problem you have with the Aide.  Give details if appropriate.  Instead of saying "She's always late," you could use your notebook and say "on Monday she was 25 minutes late, on Tuesday she was 15 minutes late, on Wednesday she was 35 minutes late, on Thursday she was almost 30 minutes late and today, she came on-time today but just told me she is leaving an hour early.   That means I've lost 2 hours and 45 minutes of my time this week, including the hour today with her leaving early.  I only get  2 hours a day, so it's like I'm losing a day and a half of service this week."  Describing a time problem like this, with how much time you are losing of your allotted time, puts the problem in a way few could argue about or defend.  

If the problem is a poor quality of work, or "an attitude" give clear examples.  

She is polite and sweet, but leaves paper bags on my stove.  (Versus: I want a new aide.)

He doesn't know how to wash clothes; I had my neighbor show him.  (Versus: He doesn't know how to do anything.)

I don't feel safe when she helps me stand up.  We both stumbled when she pulled on my arms and we both almost fell.  And now I have bruises on my arms where her fingers were. (Versus:  My aide doesn't like me.)

When I asked him to help me brush my teeth, he said 'do it yourself, old man!'  (Versus: My aide is mean to me.)

My bed needed changed because I soiled it.  She rubbed the sheet with the feces on my arm and said I needed "potty trained" because I "acted like a baby."  (Versus: She treats me badly.)

I asked her to say something before coming into my bedroom because I cannot hear and she unintentionally scares me when I can't hear her coming, she said 'well ain't that just too bad!' and she belittled me.  (Versus: We don't get along.)

These are clear examples of problems the office should know about their workers.   By giving descriptions, you will convey the exact problems and the setting in which the problem happened.   

IF YOU HAVE A COORDINATOR / CASE MANAGER

You should also report all problems to anyone assigned as a medical case manager or coordinator.  In Ohio, a State Coordinator/Case Manager assists with finding agency help and arranging for care.  But these case managers also should help you resolve problems with the company or employees, by acting as an intermediary for you with the company.  He or she might be able to word the problem differently, or help the company see your point of view.  Also, case managers have some power over the company in that, with your permission, your case can be moved to a different company.  That fact in itself is sometimes enough to help push a company to resolve problems.

I DON'T WANT TO GET THE AIDE IN TROUBLE

Sometimes, you might feel you will "get an Aide in trouble."  Do NOT be afraid of telling the Office & Supervisory personnel about the problems you have with an Aide!  The office NEEDS TO KNOW.  And you should expect the office to reassure you that they will take action, whether to correct the Aide's behavior, or to replace the Aide in your home.

Sometimes, you might really like the Aide -- except for one or a few problem areas -- and you want the Aide to continue on your case.  Only YOU AND the OFFICE can decide if a problem is minor enough to permit an Aide to stay.   If you DO want the Aide to continue your care, you can tell the office your wishes and ask that they help to correct the problem(s).   BUT, there are some situations that NO patient should have to deal with, no matter how much a patient likes their Aide!   And the company may HAVE to replace an Aide even if you really like them, depending on the severity of the problem(s).  

WHEN ALL ELSE FAILS - OR WHEN AN AIDE ABUSES OR STEALS

There are certain problems that should be reported only to the office, but other severe problems that should also be reported to people who are above the office (agency) -- ones that should be reported to the Police.   Examples include:  Theft (the very first incident of theft - don't wait); drug use in your home; abuse (especially sexual abuse, physical abuse).  You should file a police report - and ask for a copy of the report (you might have to request a copy in writing before it is sent).  A police report protects you by documenting the "who, what, when, where, and why" -  who did what, what was said, the name of the person (Aide), the date it happened, what room / location of the event, and why you are making the report.  This can help the police to help you.

There are times when everything you try fails.  Nothing improves.  You've reported problems to the office and nothing changes.  You might feel stuck with the Aide, and the Office staff is not responding well to your complaints.   Some patients have found their complaints begin a "revolving door" of different workers into their home, or long periods of days or weeks with no Aide being sent.  NO Patient should put up with this!

Make sure you call the Office to report "no-shows" and tardy arrivals.  Do this within an hour of the time the Aide should have arrived to start the shift.  If the Aide is late 3 times, or if you have no coverage for 1-3 days (this depends a lot on your needs), make sure you report it to your case manager.  If your needs are such that you must have an Aide with you every day -- or if their absence means you do not eat, are left in a soiled bed, & you cannot go to the bathroom unless you have a helper there, you should report no-coverage DAILY to your Case Manager.   Call the case manager to report problems which do not resolve with you talking to the Aide, giving direction and feedback.  

But, if the problems of care are so severe, repeated, or do not seem to get resolved by talking to your Case Manager, you have the right to go beyond and "above" that person.  But, where?  Who do you call?  What can you do?  Who will listen?  When and how can you make a formal complaint against the company?

ADVOCATES FOR CHILDREN TO AGE 18 or 21.... 

ADVOCATES FOR SENIOR CITIZENS

Unfortunately, all States are different in terms of who you can contact next.  All States have Child Protective agencies, who serve as Advocates and as "protectors" of the young, under State Laws.   Abuse of children receiving home care would be handled much the same as abuse of children in other situations.  The protective agency would initiate an investigation, and upon those findings they could take action.  Reports can be made anonymously, but your report will be better if done directly by family/parent/ guardian since you will be most familiar with care given by an agency.  In addition, though, you could still complain through the usual complaint process for home care services.

Senior Citizens often have access to a professional Advocate or Ombudsman, often as part of programs specifically designed for elder care.   Often hospitals or local "crisis lines" will know who to call, if you are unsure where to locate an advocate.  

For others, especially those who are 21 to 64 years of age, who have an "acquired disability," you may find there is NO "patient advocate" for the home care setting.  (Versus a congenital disability, where those patients are often already involved with other agencies who employ an "advocate."  Or, versus a patient of any age who is in a nursing home or hospital, where "patient advocates" are employed year-round for "in-house" patients.)   If you are in the former category - 21 to 64 years old with an acquired disability - you'll probably need to use a formal complaint process instead!

FORMAL COMPLAINT PROCESSES FOR ANY PATIENT

On the first day of Home Care when the nurse came to "open" your case, you should have received a written list describing your rights and how to file a formal complaint. Again, all States are different (unfortunately for patients).  But, typically there is a hierarchy of who you should call first, second, etc.  If you are unsure of the process, ASK.  If one person is not helpful, ask the person "who is your supervisor?"  These employees of State agencies are required to give you the information of how to file a formal complaint (the actual home care companies may balk at giving the information, but they too should give you names and phone numbers of who you can contact).   

Some levels in the complaint process might require you to "put it in writing" - but others may take your verbal complaint over the telephone.  When you make each step, you should wait for that level to resolve your complaint - before going to the next level up.  The levels may include: a supervisor or manager over your Case Manager - if the complaint involves the Case Manager's duties. Within a home care company, you can go through the supervisor levels to managerial levels -- all the way to the corporate offices if you want.  

BUT, you do not HAVE to wait to make simultaneous complaints both within and outside of the usual "complaint process."  And, you may feel your complaints are so serious that rise to the level needing intervention by the State Health Department or even Federal agencies.

(Note: You may also be able to complain through Municipal, Local, County, to State Health Health Departments.  Companies are required to follow "the strictest rules" among these various agencies - whichever has the strictest guidelines governing home care agencies.)

WHO IS PAYING?  WHO CERTIFIED YOUR HOME CARE COMPANY?

Few patients stop to think of who is paying for services, and this is an avenue for a complaint "outside the normal process."  Most all home care companies are evaluated to become "Medicare Approved."  This means the company met certain MEDICARE guidelines to become "approved," and they must CONTINUE to meet the Medicare standards to continue to be "Medicare approved."  If you have a "skilled need," and you have Medicare - that means - usually - that your company is being paid by Medicare.  Medicare has auditors and "quality assurance" divisions who oversee the agencies delivering care.  

These separate offices, along with the Medicare Fraud unit, can investigate complaints.  Typically quality assurance (QA) responds to quality of care issues, while the Fraud unit investigates inappropriate billing or charges.  QA would handle such things as Aides not being trained well, or anything involving "care" given or not given to the patient.  Fraud would address issues like if your Aide or company falsifies time slips, or the company bills for services not given.  When you get services through Medicare, you should get an statement of charges from Medicare, which you should review for errors.  If you want to make a complaint about Medicare-approved agencies, check with 1-800-MEDICARE for numbers to the correct office in your State.  

If your insurance is State Medicaid, the home care companies have met Medicaid guidelines for approval.  Most home care companies are "approved" by BOTH Medicare and Medicaid if they want to deliver services to both types of patient insurance.   Medicaid approval means the agency can bill through State Medicaid programs, and thus, are subject to State laws and rules.  Usually the State's Department of Health is charged with dealing with complaints about agencies paid through the State, and so you can make a separate complaint to the State Department of Health.  (Exception: The State Department of Health may already be the last part of the formal complaint if services are paid by Medicare.  But, even if they are listed last, you can skip other levels and go directly to the State if complaints to the company have been unresolved AND your complaints are serious.)   

If you have both State and Medicare insurance, make your complaint to whichever is paying for YOUR services.

WHAT HAPPENS WHEN YOU FILE A MEDICARE OR MEDICAID COMPLAINT

Your complaint is typically taken verbally, by telephone.  You will need to provide information about yourself (usually).  [Some complaints can be made anonymously but other complaints will only be helped by them having "identifying information.".]   WHO made the complaint about issues of care will NOT be shared with the home care agency.  You should give names, dates, and what problems happened, when.  Tell what happened and what you tried to get the problem fixed, including names of who you complained to, with dates.  (Give approximate dates at least.)   Include names of anyone who witnessed the problems as they occurred.   

When agencies are paid through Medicare or Medicaid, these agencies go through a periodic "review" (also called a "survey").  These surveys are done routinely, usually yearly - or more frequently if problems are found that need correction.  But, a complaint triggers an almost immediate new survey, usually within 3 to 6 weeks from the date of a complaint (often within 4 weeks).   Medicare or Medicaid will contact the agency to arrange for the survey -- or an investigator/surveyor may just show up at the company unannounced.  The surveyor will ask for a selection of say 10 patient records - yours will typically be included in the records request.  BUT the surveyor will NOT identify you as being the one who made the complaint.  You may say "But the company will know!"  So what if the company does guess?  The surveyor/investigator is bound to NOT reveal your identity - even if the company guesses correctly.  And you must remember, they were not giving you good or proper care, and your reporting is essential in order to stop the company's bad practices!

The surveyor will then go through each patient record, looking for compliance with the regulations which the company must follow in giving care.  These regulations cover so much that it is impossible to discuss here.  But they include areas of: employee hiring and in-service training, patient care standards; documentation of patient services; and billing - to name some.  The standards that companies must meet are strict and companies must be in compliance - or take corrective action within a specific amount of time - in order to continue delivering services.  Companies may be made to return all or a portion of Medicare or Medicaid monies, along with other sanctions, if they are not in compliance with Medicare and Medicaid standards.  Other sanctions can include loss of Medicare and Medicaid certification and losing their license to deliver care.  If a company loses its license, it is basically out of business.  The Attorney General can get involved if the accusations & findings are serious enough, and that office can pursue criminal charges.

Patients can go directly to the Attorney General's office, skipping all other previously described complaint processes, if a patient chooses to do so.  

After the investigation is complete, you will usually get a letter of the "findings."  And typically you can request a detailed report by putting your request in writing.

YOU personally may not reap the benefits of making a complaint against a home care company.  BUT you will be helping hundreds to thousands of other patients from having to go through the same or similar problems that you had with a specific company.  Often patients are too afraid to make complaints until after a company has stopped delivering care.  This is not ideal -- for you -- because you deserve good care from good home care companies.  But, fear is understandable.  You can make your complaint while still receiving care.  If you do, you should not suffer any consequences in care - but, in the real world, it IS possible.  Companies can always exercise their right to terminate services with a 30 day notice.  Because of this fear, many patients wait to file a complaint until after the care has ended.  Obviously, it is best to complain either during care or quickly after care has ended, when your memory is fresh about the incidents that happened.  

Your documentation of problems and your complaint to Medicare or Medicaid may end up helping to change the home care industry!  It might not happen quickly, but if every patient made complaints about poor care (service), changes WILL happen!  

Commonly Used Abbreviations in Long Term Care (and Home Care) - external link