The Move to “the community”

Recently we moved our 22 year old son from the ICF/ID he had lived at for the past 5 years to a home in the community in a supported living environment.  The differences in communication and collaboration have been astounding to us.

As an advocate I do support the ICF/ID and we would have probably never considered a move for our son if it had not been for the medical and nursing neglect and abuse that our son suffered for the past 4 years.  We loved the campus community and our son was very happy. It was solely due to the medical/nursing neglect and inability of the team to provide for our son’s healthcare that we started the process looking for another residential setting.

There is an ongoing investigation into many of the neglect and abuse allegations and I am in the process of gathering documents, photos, and emails as evidence in this investigation.  Reading this exchange that I had with the ICF/ID manager about the night I had to come take my son to the ER to be evaluated for a medical problem they refused to assess became the typical type of response I would get for the many subsequent medical and nursing errors and neglect from December 2011 until he moved in March 2016.

Remembering this event makes my blood boil and I am furious that a concerned parent was treated with such disrespect.  I also have to say that the questions I asked were never addressed and the “primary care provider” at the ICF/ID never had a conversation with me about this issue.

Bowel obstructions are one of the leading causes of preventable deaths for people with intellectual disabilities.  This is the condition that I had suspected may be occurring with my son but the team refused to consider it as a possibility.  They believed he was having behavioral problems.

One night I just happened to call only to find out that he had not had a BM for 6 days and they had basically been giving him a prep for a colonoscopy and he was still not having a BM.  I was so concerned that I decided I finally needed to overstep them and take my son to the ER.  I arrived at his unit one hour after I had called and it took them 2 hours before they would allow me to leave.  This was my first experience with anything like this and in subsequent issues when I needed to take my son to the ER I would just go and take him – the paperwork could wait and I did not need their permission to take my son to the ER.

Thursday – email from manger to the mother – 6 days after the event and this was the first communication that I had from the manager!

You are welcome to come and visit Your Son any time you like as you did last Friday.  We do ask that when you do visit please remember that this is a home and there are other clients who live here. During the night when clients are sleeping please try to be quiet enough not to disturb them. During your visit several clients woke up and did not go back to sleep after you left the unit.


Thursday Afternoon – response from the mom to the manager
Remember also, that he is my son and I was rather concerned about him and was not getting a response from the team with regards to my concerns regarding issues with MY SON and my concerns about the possibility of this fecal incontinence and constipation being an issue of neurodegeneration rather than behavior/functional issues.  I’m rather upset that it had to get this far before my suspicions were confirmed and not one person has apologized to me or said anything regarding “I’m sorry this took so long to figure out” but get reprimanded for waking clients?   Do you realize the critical issues that could be involved if this was left unattended to?

I was trying to be respectful and I believe that one client was already awake.  Given that I had to wait there for over an hour with MY SON while the nurse and duty officer were called and then had to wait until they went and copied information, I would have been out of there much sooner but had to wait due to issues there.

Is it protocol to inform parents about changes that are done?  I had no idea about the medications that MY SON was given and also that he did not go to school on Monday but instead went to Respite care.  I found out about the respite care when I arrived to get him in the evening.

What is standard protocol?

By now, it should be clear that I am an involved parent and would like to know what is going on with MY SON if there are changes.  This did not happen.

I will continue to be an advocate for my son and others and as I pointed out the only reason that I was there so long was because I had to wait for people at the ICF/ID to get the paper work and issues together.  I would have gladly just taken him but I was not allowed to.

Friday morning – email from mom to manager

Maybe you missed the reason for my “visit”.  I was there to pick up MY SON to take him to the EMERGENCY ROOM for a medical problem.  A medical problem that I had attempted to inform the team of there at the ICF/ID but one to which the team did not think that MY SON had.

What issue about this are you complaining about?  I would have gladly just taken him but I was told that I was not allowed to do that and had to wait while it was figured out what staff, the duty officer and the nurse needed to do to allow me to take MY SON to the ER for a medical problem.

As you know, MY SON talks – ALOT. Particularly when he is ready to go and cannot leave.  I was doing the best I could to keep quite.

Or, are you complaining about when I brought him back and showered him and cleaned him up and put him to bed?  At that point, he was leaking poopy enema fluid uncontrollably so I thought it was best to clean him up.

Of course I would not generally “visit” at that time of night but given the circumstances of the situation and the timing of when I, as his parent/guardian, found out about the medications that were given to him without my knowledge and that there was no result from that medication, it was in MY SON’s best interest to take him to the ER and be treated.

As you know, I had attempted to have this issue treated in a non-emergent fashion but no one at the ICF/ID seemed to believe that MY SON had problem and would not do the test to rule out what I believed (and has now been confirmed) the problem was.

I’m sorry that another resident may have woken up in the process of taking my son the ER to have a medical problem taken care of which was not being addressed there.

When a medical issue arises are the major concerns about other residents waking up or about the medical issue?  Sometime there are priorities and it doesn’t mean that you don’t care about some of the other things but when making priority decisions sometimes other things happen that can be dealt with later.

Again, this was not a “visit” as you have written but a medical issue for which I took MY SON to the emergency room.

Saturday morning email from manager to the mom

I am aware that you were not there for a visit, and that you were there to take your son to the ER. I should have stated that you are always welcome at any time. Again I was just asking you to respect the other clients that live with your son especially during sleeping hour. I understand that you had to wait for some time until the staff, nurse and duty office could gather up all the necessary information so your son could go to the ER. In the future if it is possible for you to call ahead of time so the proper information could be prepared for you and easy the transition/ wait time to get him to the Doctors.

Saturday afternoon – email from mom to the manager

I would hope that there will not be a next time and I would not ever “visit” at this time of night anyhow except in an emergency. I had no idea that I would have to have all that paperwork in order to take my son to the ER.  Also, I had called earlier around 9:30 or so when I found out that he had been given mag citrate and I told whoever I spoke with that I would be coming by.  It took me that long to leave where I was and get to the ICF/ID.   This was an unusual circumstance and rather than chastising me wouldn’t an apology or comment regarding the fact that we can now understand what some of the issues with my son might be would be in order?  I’m not one to come in and make a disruption for my son’s housemates and I try to be respectful of what is going on.
I am still waiting for information regarding medication administration and respite care without notifying me.  This is a learning process knowing what the protocols are and what is and is not expected.
The reason this interaction is highlighted is that this past week my son missed a scheduled appointment.  I wrote to the house manager and the response I received was a prolific apology and her statement that it was her fault that the appointment was missed, what the circumstances were regarding the issue and how it was going to be remedied.

I was actually treated well and respected as a caring parent and given an honest answer. This response would have never been given to me from the ICF/ID.

Sometimes all one needs to hear is “I’m sorry.”


2 comments on “The Move to “the community”

  1. ddexchanges says:

    I am logged in. It says, “ddexchanges: You are commenting using your account. ( Log Out / Change )” but when I clicked “Post Comment” I got a messages saying I had to be logged in to post. Since I already was logged in, I clicked back. My post was gone. I hope you got it for moderation.


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