Tuesday, September 1, 2009

How Not To Run A Group Home

This past Saturday, I made a trip to Jessica's group home to take her some new school clothes and school supplies. What I found when I arrived was more than appalling. I thought the best way to share my observations would be to let you read the letter I have written to group home managment and copied to our state's licensing organization. When I get responses, I will share those also.

(The picture is not of Jessica's bathroom, but the problem was very similar)

August 31, 2009

Ms. Group Home Manager
Group Home Company

Dear Ms. Group Home Manager:

As I mentioned to you on the phone this morning, I visited your children’s group home on Saturday, August 29, 2009, and was quite disturbed about the condition in which I found my daughter’s bedroom and bathroom. In addition, I noted several other things in the general living area of the home that I believe need to be addressed. I have listed my concerns below:

  • When I arrived at approximately 10:00 am, my daughter, Jessica, was sitting on her bed clothed in shorts and a tee-shirt. I noticed that there was vomit in her bed, and that she smelled both of vomit and general body odor. I asked her if she had vomited in her bed, and she said she had, when she had been sleeping. I also asked her if she had taken a shower either the previous night or that morning, and she said she had not. I asked her to remove the sheets from her bed, and I went to inform one of the two staff members present that Jessica had vomited in her bed. At that point, the staff member who had been cooking breakfast came to Jessica’s room and took the soiled sheets away. The other staff member remained sitting on the couch in the living room.

  • When the bedding was removed from Jessica’s bed, I noticed that the plastic mattress cover was in shreds, obviously providing no protection for the mattress. Since Jessica is often incontinent, I believe more attention should be paid to having the appropriate plastic cover on her mattress. Due to the type of plastic covering on the mattress, Jessica was unable to remove it. The staff member did not remove it when she took the bedding away.

  • Jessica’s room is carpeted but there is also a small area rug on top of the carpet. That area rug was not lying flat on the floor, and Jessica tripped over it twice while I was there. Also, the mat in her bathtub and the mat on her bathroom floor were similarly bunched up, and appeared to be a danger to Jessica considering she does drag her left foot.

  • Also in her bathroom, I noticed that the bathtub hand rail used to assist Jessica in getting into and out of the bathtub, was covered in mold. Sitting on that rail, and touching the mold, was Jessica’s toothbrush.

  • I began to clean out and sort the clothes in Jessica’s closet. While doing so, I noticed many gift bags such as one would receive at holiday celebrations (Valentine’s Day, Easter, Christmas) filled with candy. Obviously the candy had been there for quite a long time. I also found similar bags of candy on her dresser. I am concerned that the presence of candy for such a long time would draw either insects or rodents.

  • Jessica’s entire room, in my opinion, had not been thoroughly cleaned in a very long time. Inside the lamp in her room, was a thick layer of dead bugs and dust. The tops of her dresser and other furniture in her room was covered in dust and sticky substances, her carpet was very stained and appeared to not have been vacuumed in a long time, and her windowsills were thick with dust and dirt.

  • On that morning, the temperature was approximately 85 degrees at 11am. The air conditioner in the home was not on. Rather, Jessica’s windows were open as were several other windows in the house.

  • Sitting in Jessica’s open windowsills were a can of Lysol and a can of Pledge.

  • As I was leaving the group home, I also noticed that the medication closet was unlocked.

As you and I discussed, it would be ideal if Jessica was able to completely care for her room, clothes and bedding. I fully support and expect that she will play a role in those tasks, and believe they are part of her plan of care. However, given her level of intellectual disability, the fact that she only has use of one hand, and her emotional instability at times, I believe it is unrealistic to think that Jessica is capable of maintaining those things alone. Also, given the fact that the group home company decided to move the children’s group home from the West End of my city, a location that was just 5 minutes away from where I live, to the far East End, a 40 minute drive away from my home, and understanding that I also have another child that is medically fragile, it is not realistic to expect me to be at the group home often enough to maintain a level of cleanliness in Jessica’s room and bathroom. In fact, given the amount of money that the group home company receives for Jessica’s care both from Medicaid and from me, I would expect a higher level of attention to cleanliness and care for Jessica.

I am more than happy to discuss this further with you. I believe at a minimum a professional cleaning staff should be contracted to thoroughly clean Jessica’s bedroom and bathroom, including carpet cleaning and window cleaning. I also believe Jessica’s rooms should be painted, and then a plan put in place to ensure that an acceptable level of cleanliness is maintained.

Please feel free to contact me at the address/phone number listed below.

Jessica's Mom
My Address

cc: Department of Behavioral Health and Disability Services,
Office of Licensing
Attention: Person in Charge


mommy~dearest said...

Wow. I am totally speechless at the moment.

Casdok said...

I do hope you get replies and satisfaction. It is more than appalling.

Terri said...

Disgusting. A few pictures to them and their regulatory agency would make excellent next steps.

Cheryl said...

I don't think that was harsh enough. Run this by the P&A folk

Robert Weetman said...

As only a very occasional visitor here I'm driven to write something in response to such a powerful posting. I hope you don't mind, and that I don't write stuff that you already know or which is unhelpful (do ignore what I say if I do).

I want to share an idea that I'm very familiar with in case it's helpful here - something I've found helpful in my own thinking about 'what can be done' in situations like this...

I think that one of the most powerful ways to challenge this kind of horrific practice is to make sure that someone living in a home of this kind is visited regularly by people who aren't immediate relatives. The point is that 'care' systems are set up to deal efficiently with relatives who are unhappy with what's happening to their relatives (ignoring or otherwise diverting them). But they aren't set up to deal so effectively with non-relatives.

An ordinary (non-relative) person visiting puts something very new into the situation. An ordinary (non-relative) person writing a letter of complaint is much more powerful (in their eyes) than anything a relative can write. An ordinary (non-relative) person is seen as a bit uncontrollable (they might write to the newspapers or something!).

Some (many) families don't have such a person/people available - but I know of projects that find people to do this. I'm not suggesting that there should be more such projects - simply that this proves that it is quite possible to find people to take on this role.

It's worth saying that when this is done well it's not a 'role' that people play - because as they get to know the person concerned it becomes personal (they move beyond being a 'volunteer').

Best of luck with this situation - I hope it helps to know there are lots of people behind you.

Ashley's Mom said...

Robert, thank you for your comments. They certainly made me look at this situation in a new way, and I agree with you. A non-family member could get a different response. I hadn't thought along the lines of these systems having protocals for dealing with family members, but not necessarily for non-family members.

I have someone in mind that would be willing to assume this role. I'm going to give it a shot and see what happens.

Thank you for helping me see things from another angle. This is why I blog...

Robert Weetman said...

I'm pleased if you find what I said useful. Do please say how you get on.

I'm not so much thinking of official protocols as established practices and attitudes. Probably the protocols stay the same, but the response on the ground can be different.

Perhaps have a careful think about how this person will describe their role before they visit. There are big differences between options like "I was sent by..." and "I'm her friend, I've known her for years" and "I'm just a local person who is getting to know...".

Queenbuv3 said...

I'm so sorry you had to find her living in these conditions. NO one should live in those conditions. Good for you to write a letter that detailed the obvious neglect. I hope some action is taken. Please keep us posted.

Dalya said...

Hi, I am just wondering what exactly Jessica`s diagnosis is? I know looking this over it may sound wrong but I am not sure how else to ask. please know I am not saying "what is her issue that she cant do everything for herself when she should be able to" I dearly love to follow your family's news which you represent in such a real honest way. I truly hope this awful issue is soon resolved.


Ashley's Mom said...

Dayla, Jessica was diagnosed with brain cancer at 4 months of age. She had a tumor removed and 2 years of chemo and radiation. That treatment left her with a significant cognitive impairment and hemiplegia (no use of her left arm and limited use of left leg and foot).

However, worse than that, she spent 9 years in the foster care system before I adopted her. Along the way she was physically and sexually abused, and that whole situation left her with a fairly significant mental illness. She has outbursts of rage and aggression and has seriously hurt several people (me included), and because of the cognitive impairment, it's difficult to help her move past those things.

So, she is in the group home so she can be monitored for the mental illness and can be helped with activities of daily living. She is capable of doing some homecare tasks, but not to a good level. I expect that she will be responsible for her laundry and a good deal of keeping her room straight. But, she is not capable of getting on her hands and knees and scrubbing the bathroom, for instance.

Hope that answered some of your questions!

Linda J. Meikle (Former Linda Cash) said...

I'm not speechless. I've worked as a LPN in many group homes and have found few where I would allow my child to spend the night. Having said that, I hope that my presence has made a difference because I would never tolerate abuse such as you witnessed. I suspect you live in my city (speaking of the butterfly conservatory). I hope you get a response, but many of our gov. entities have been cut to the core with budget contraints, and few are left to follow up on complaints. Usually there is someone 'in charge' on site who could respond to your concerns. Like a 'house manager' or group home manager? Next time 'yank' that lazy worker off the couch and show him/her the cleaning supplies! They can't complain about you demanding that the right thing be done. Hope this helps. My heart and prayers are for you and yours.
PS I have your link on my website.