The events of the last month leave me to wonder if this journal serves any purpose.
The conclusion I have come to is the only way to keep your loved one safe in a group home or assisted living facility is to keep them out of one. The only person you can depend on is yourself.
In the last month, I have observed the following in the group home Amber lives at:
- For a period of 20 days, nobody bought food for the residents. The last few days of that, one of the meals consisted of 1/2 of a burnt hamburger bun.
- Someone then went shopping but nobody seems to know what they bought. Today I took photographs of an empty fridge and freezer. The manager acknowledged it but said she would go shopping tomorrow. She has been saying that since last week.
- The company has not been buying gloves for the staff. The management has advised the staff that when wiping a residents ass, to use plastic grocery bags on their hands.
- Today, I found mold growing on an open wound and the bandage of Amber's catheter. The staff knew but didn't say anything to anyone, not even her.
- Today we both begged the staff to give her a shower.
- Last week I went to the home and found Amber, arms immobilized, and locked in her room with no staff in the house and none expected for 6 hours later.
- Another resident in the house admitted to me that she lies by saying everything is great so she doesn't have to face their wrath when the state does nothing to help. She is just waiting until she can get out.
- There is so much more and yes, I have photographs and audio recordings of this, and have shown everyone who cares to see. Nobody cares.
So, everyone says call the case manager and Adult Protective Services. I did. They came, they investigated, and they said the living situation was unsafe for Amber to live in. Guess where she still is weeks later? They're looking for a safe place for her but admitted it could take months. The company has received no sanctions what-so-ever.
Nobody gives a shit.
The only way to win the game is not to play. Find a way to keep them out.
They say a picture is worth a thousand words. When it comes to a neglectful or abusive group home, a picture may be your only words.
There comes a point in advocacy where you need to stop continually trying to make a pleasant situation with the staff and management; being nice to the company so they will hopefully be nice to the resident. This tactic rarely works. If they know the resident and advocate are weak, they will eventually learn to take advantage of the weakness. This is just plain human nature in every life situation. Be polite when it's needed, but also be a pissed off momma Sasquatch when politeness isn't working anymore. Speak up!
When you see problems, take lots of pictures. Get a nice digital pocket camera, set it to the highest resolution and highest quality possible and take multiple pictures at multiple angles. If you see an insect on the floor, consider it your personal goal to get a picture good enough to see it's eye color and whether it brushed it's teeth or not. Show the photos to the caseworker before showing them to anyone else.
I'll share a recent story about why it is important to have proof.
For several months now, most of the food at Amber's group home was junk food. It had little or no nutritional value. Tons of potato chips, hot pockets and chicken pot pies. Rarely did I find any items like real chicken, beef, pork, fish or vegetables. Was this the policy of the home? No, actually it was just one far too young manager not knowing how to shop. She shopped for value, not for health. It was fixable but it was just not getting fixed. Hard-line measures needed to be taken.
We then had a meeting with the home management and the caseworker. The ex-manager, now program coordinator, insisted that Amber's breakfast of choice was always Cheetos, Graham Crackers, etc. This was a lie. When you only have one choice, you have no choice. They said they would review the menu and would make adjustments. Good, this is what was needed and wanted.
A few days later, when I inquired about the food situation, the lead staff member angrily went to the freezer and pulled out real chicken, pork and fish while insisting that it was in there all along, some of it for several months. The program coordinator backed this story up. Had the caseworker shown up at that point, they would just say the complaint was false and there would be no proof otherwise. See the photos down below and make your own decision on who is telling the truth.
Luckily, with assistance, Amber had taken high resolution photographs of the contents of the cabinets plus the fridge and freezer. We showed them to the caseworker before telling anyone else about them. The caseworker went in knowing in advance that he was being lied to by the home management.
I have included Amber's photos in this post. This is what they considered to be nutritional meals. Consider them to be examples of photos you might take yourself some day.
- Upper food cabinet.
- Lower food cabinet.
- Top of refrigerator.
- Fridge compartment. (Just for clarification, the bazillion Monster sodas belong to the staff. With all of them removed, it was pretty barren inside.)
- Freezer compartment.
- Just the Eggs (This is from today. Notice that it is 23 days past the date and by law they cannot have food past the date on the package.)
How many bags of chips, cookies, and crackers; varieties of hot pockets and pot pies; and hamburger can you spot in these photos?
This is the kind of stuff that photographs can prove.
The bottom line is this. Don't think of any of this as "getting them where it hurts." Just do what you can to keep them healthy and safe.
The hardest part of any of this is putting aside misplaced remorse. In our own battles, many of these caregivers are nice people. In any other situation they could be friends. Pointing out or reporting their faults isn't easy. On the next day when they may be acting nice, it makes it even harder. That is human nature too.
Remember that just because someone is nice, it does not make them a great caregiver. To be a great caregiver, not only do you need to be kind, but you need to be a no-nonsense person too. Care isn't about making resident smile at least once a day, it is about doing everything necessary to provide them with a healthy mind, body and spirit, and to do it without complaint and without having to be begged to do it. It is about doing your job.
If you're a caregiver and you leave this site angry at me, you really need to consider other employment options because care-giving is not for you.
The rest of this is personal... If you are such great caregivers, why was one of the residents calling out for help from her bed and nobody came for almost 12 minutes? Why was nobody responding to the call bell from the other resident for 5 minutes? Why was no staff inside when three residents were inside, two of them in bed? I'll tell you why. It's because most of the time you and the rest of the staff were outside in the backyard, smoking and bitching about how angry you were for being recorded by all of the hidden cameras. Did you really think that nobody heard this going on? I heard it. Calls were made. Yes, I know you're all working 16 hour shifts and I am sorry, but this is your job and your failure to do it effectively is hurting everyone else.
Today turned out to be an amusing day on the HIPAA front. I had planned on making this post quite a bit more detailed but have decided to tone it back a little since anything I disclose would help those who would otherwise attempt to cover things up.
Getting back on topic, it is very important to use every legal means you have to document neglect and abuse. Know your local laws! Nursing homes, group homes and the like will cite to you fake laws and rules in an attempt to stop you from documenting neglect and abuse. Don't fall for the fakery.
Today I was able to witness an actual criminal act and quite possibly a civil rights violation. Just hours after my last post, a caregiver discovered a nannycam installed in a residents private bedroom and upon getting no legal advice from his Facebook buddies, he took it upon himself to deactivate and confiscate the device. Big mistake. Big big big mistake.
All involved said it was a HIPAA violation. Bull!
Let's review HIPAA once again.
A Health Care Provider
A Health Plan
A Health Care Clearinghouse
|This includes providers such as:
||This includes entities that process nonstandard health information they receive from another entity into a standard (i.e., standard electronic format or data content), or vice versa.|
Any other person who is not listed above does not have to comply with HIPAA. Neither a resident, their family, their friends, their roommates or their dog can violate HIPAA. I could quite literally climb atop a tall tower and scream "Fred takes Prozac!" and the only law I would be violating is good taste. The group home, on the other hand, could get a $25,000 fine because unless Fred himself (or his family) was the one who told me he was taking Prozac, I should never have known it in the first place unless the group home somehow violated it first. That is how HIPAA works.
A resident or their guardian putting a camera in their bedroom does not violate HIPAA. Now if the group home put it there without consent, yes, that would violate HIPAA and probably every wiretapping law in every state.
As far as my own state of Arizona goes, the permitted uses of audio and video recording are detailed in Arizona Revised Statutes Title 13 Chapter 30 - Eavesdropping and Communications, specifically in sections 13-3001, 13-3005 and 13-3019.
Not only are resident or guardian placed nannycams legal, they are quite specifically protected within Arizona law ( see ARS 13-3019, Section C ) The caregiver who deactivated and confiscated the camera should probably start looking for an attorney before asking for advice from Facebook buddies. This is going to be amusing to watch.
It's been an exciting week for this humble writer.
As I have mentioned before, some of what I write here comes from my experiences from being my girlfriend Amber's advocate. A week ago, while on her way back to her group home, Amber was hit by a car while crossing an intersection in her power chair. Hit and run. She spent three days in ICU and six days total in the hospital with a subdural hematoma and temporal contusion. The doctors expect a full recovery.
Some good may have come out of this though and it will probably lend considerable material to this post and future posts.
This post is about Documentation.
More important than Keeping Notes of Incidents is keeping detailed documentation. There is a difference between the two. Consider notes to be reminders of how you will conduct meetings with case managers or neglectful group home staff. They keep you on track. Documentation is different. Documentation is for the caseworkers, lawyers, jury and judge when you go to court. Documentation is evidence, notes are just notes. You get the idea.
In Amber's case, detailed documentation is kept. This includes audio recordings of conversations with group home staff; surveillance cameras in her private room; and digital photographs. In Arizona, this is completely legal as long as she is the one doing it. Only one party of a conversation needs to be aware that the conversation is being recorded and the person doing the recording counts as that one person. As long as the person doing the recording is an active participant in a conversation, they can record it. Please check wiretapping laws for your own state using the links provided at the bottom of this post.
Be warned, management and staff will try to tell you that this is not allowed because it is a HIPAA violation. Seriously, laugh in their face. Only management and staff can violate HIPAA, not residents. You can release your own information all day long, but if you accidentally release someone else's information, it is only because someone else violated HIPAA by disclosing the information to you first.
If you decide to show some damning photographs to management, it's best to do it by surprise. If you ask them if they would like to see it, they are required to say no. As long as the management or staff does not see the evidence, they can legally claim ignorance but as soon as they see it, they no longer can. Even though I know they will refuse, I always make the offer to show a few select photographs but I only do this AFTER we have shown caseworkers or inspectors and they have entered it into their official notes.
By the way, when it comes to protecting the one you advocate for, it is perfectly acceptable withhold information from the staff or outright lie to them. If staff requests for you to stop recording and photographing, lie to them and tell them you will comply. Keep doing it. You have the right and responsibility to discover and document neglect and abuse. At the same time, never lie or embellish the truth when speaking to the caseworker. If at some time the caseworker goes sour, report them and request a new one, but don't lie to them.
My next post will be about how proper documentation (aka evidence) was used to resolve some of problems discussed in an earlier post. It is wasn't so serious, it would almost be amusing. I'll post more photos.
Here is a list of state-by-state laws regarding electronic recording of conversations.
This is a two part in one post.
Both parts emphasise the reality of what living in a assisted living group home is like. The first part demonstrates how caregivers legally use information from the residents psychological profile to manipulate them and the second part demonstrates why it is important for advocates and guardians to make surprise visits to the home.
When Amber arrived at her group home last night she notified the staff on duty that she would like to be bathed. Working that evening was a male and a devout Muslim woman. Even though it is specifically permitted in her ISP, the male worker refused to bathe Amber. For the male worker to bathe her, the Muslim worker would need to be present but she refused because it is a violation of religion her participate in bathing someone if a male is present.
Amber then asked the Muslim worker to bathe her and immediately the woman began to complain about her back injury and said she would prefer not to bathe her. It would also be unsafe for an injured person to do this since Amber could be physically hurt if the woman had injury related problems while transferring or bathing Amber.
Amber decided to wait until the house manager came in at midnight and request her shower again. The manager said that since she did not forcibly demand that the injured woman bathe her, it counts as a shower refusal and that she will not be bathed. The manager specifically refused to bathe Amber and further threatened/stated she will be calling the main office to report this incident against Amber. Even though the manager works a regular shift, she announced that it is not her job to bathe people anymore. Apparently, her job is to smoke cigarettes and stock the kitchen with nothing but junk food.
Most of the staff knows that all they have to do is pretend to be injured and that Amber will fall into line.
This is why it is important for guardians and advocates to make unannounced visits and to just walk right in the front door.
This morning I received a phone call from Amber stating that her catheter had become blocked during the night and if we could not get it flushed, she might need to go to the emergency room. I hopped in my car and went right over.
When I arrived, staff had already left for the day. As usual, all the doors were closed so Amber would not have been able to get out of the house if she had to.
The rest of what I saw really disturbed me.
Over the night, the catheter leaked onto the bed. You would think they would clean this up. Nope. The actual house manager left completely urine soaked sheets and bed pads on the bed with the intent of leaving them for the rest of the day. They were soaked enough to puddle up when touched. I couldn't take a photo because since the entire bed was wet, the discoloration wouldn't show up anyway.
After I flushed her catheter out, I noticed what was meant to be her only meal for a 22 hour period. Here is photo of what they left in a bowl for her to eat. (Note: July 14, 2011. This is what they gave her for breakfast the following morning. A bag of Cheetos taped to her chair tray.)
She then rested for a few minutes and I went to make her some food. Please note from the previous blog entry they have already discussed banning me from preparing her any kind of food for her in their kitchen.
When I opened the kitchen drawer, I found yet another medication and HIPAA violation. Here is a photo of resident medications left out for anyone to find. On the top right side is a bottle of her medication and on the top left side is the other residents medication. It was bad enough leaving confidential records with the pots and pans (see last post), now they're also leaving out the actual drugs. Now I know what medications her room mate takes. I'm not supposed to know this. It's illegal for me to know this.. If they were following the law, I would not know about this and I surely would not have been able to take this photo. They will not get in trouble for this... I probably will.
After lunch, I go to her bathroom and I notice the same thing that I noticed 5 days before. The shower chair with shit encrusted on the seat. Here is a lovely photo.
Staff finally showed up at around 3:00pm and immediately reprimanded me for leaving Ambers clothes basket (containing all her urine soaked sheets) near the washing machine. He said that if an inspector showed up, they could get fined. Yeah right. I think that if the inspector was really doing his job, he would be more concerned about the unbathed resident, soiled linen and piss puddle on the bed, drug and HIPAA violations and the shit smeared shower chair.
Had I not made this visit, all of this would be swept under the rug.
Unfortunately, the state inspectors will not do a thing about it. Everyone knows it, which explains why this is just how assisted living group home life is. In essence, all of this is perfectly legal and the state will back the home up completely when a complaint is made.
I would really like for someone to show me actual documention of a group home being fined before a resident actually died.
She has contacted her case worker and requested to be moved out of the home as soon as possible.
As I said near the top and in previous posts, make unannounced visits and when you do, walk right in without knocking and go straight to their bedroom. Photograph and document every little thing that bothers you. Take pictures of bruises, cuts and bed sores. Install a nannycam and a microphone. You will need all of this later. Don't count on the state to make thngs right because they won't. Take them to court instead.