Developmental Disability, Disability Awareness & Advocacy, Uncategorized

A Child is Born – Part Two

The Neverending Story – The Nothing

This next post has to do with the reason that I decided to start a blog – and why I choose (at this point), to be anonymous. I may not always write well, but it’s still important to write – and put the truth out there for others to read. I hope that this might lead others to make a difference in their own communities – wherever that might be. Together, even one person at a time, we can right the wrongs in the world.

My son lives in Purgatory.

He’s neither here nor there when it comes to a good quality of life. It hasn’t been for my lack of trying to make it better. After all these years, I’ve hit a brick wall. It’s a wall of nothingness and nowhere. It’s impenetrable and feels like a presence; a thing that exists that seems physical – that I can’t see my way around. It’s a wall of apathy that appears to be growing day-by-day.

My son, who lives (I’ll say it again) in a group home, was medically neglected last year, and because of what didn’t happen is the reason that I felt that it was necessary to tell HIS story, which I believe is the story of many people. I know that this happens, every day, to many people in the United States and most certainly out there in the world. It’s happening at this very second.

I’ll add to that, the fact that no one in my morally and ethically irresponsible, backwards county even tries to understand that ALL people, even the most-involved – whether physically or developmentally-disabled – have the same feelings as ALL people do. Or if they somehow (in the deep recesses of their minds) know this on any kind of level – they don’t recognize the inherent right of each individual to be treated with kindness and respect – that is not based on some kind of monetary valuation. It shouldn’t “cost” to be considered a valuable human being. Every human being is valuable.

Max is a young man that lives with a small group of people who are old enough to be his grandparents and yet… taking a trip to Walmart or going through McDonald’s drive-thru is considered a “community outing” and he lives in a college town! There is a lot more to do here, but no one has any vision. No one cares and there is such a lack of creativity that it stymies and infuriates me. WTF?!

I could go on and on. Here, everyone in power, has that old-style, group home mentality thing going on. It’s miserable. It’s 2019. Not the 1970’s. Unfortunately, it does matter where you live. It matters which state you live in. It matters what county you live in. It matters what your base beliefs are and it matters what kind of people live in your community, as in are they good people who care or are they selfish and apathetic? And so what happens to many, many people in the United States (and I’m sure in other countries in the world… but I’m waiting to hear from others so I can include their personal stories in this blog)?

Warehousing. That’s what happens.

Those who are severely, multiply disabled and nonverbal – and have no way to communicate their wants, needs or desires in an “understandable” way to others who are not disabled, exist in a vacuum. They live in a kind of limbo-land. This includes the elderly who are developmentally-disabled and live in group homes. It happens in nursing homes. I’ve seen it up front, real and in-your-face.

This is the only place on this blog where I will write specifically about what happened. I have relayed the course of events to everybody that I know and all of those who are involved in Max’s life. This includes many advocacy groups/organizations at the state-level. This has led me to the horrendous realization that these are most certainly not in place to help individuals or their families. They’re more like money-raisers FOR the people that work there.

Back to Max.

Max had skin breakdown in the coccyx area. In the past, the plan had always been for him to have complete bed rest until healed – with of course scheduled range of motion and repositioning every 2 hours. Skilled nursing was called in by order of his primary care physician (PCP). The nurse, following dr’s orders, wrote in the notes that he was only to be out of bed for meals.

Almost a MONTH later she learned, and then I learned (after she notified me on the same day that she found out), that he was up and all over the group home, sitting up in his wheelchair, and out in the community going places – when he was only suppose to be out of bed for meals. What were they thinking? Why did this happen – especially considering what had been protocol for his care in the past?

After the nurse called me, I immediately called his PCP – who was out of the office on vacation. I spoke to a nurse practitioner (NP) – who was covering for the PCP. I explained what I had just discovered and we consulted.

It was agreed that the order would be faxed to the group home, that stated Max was to have “complete bed rest until healed” – and this was done. I have in my pile of documentation, a copy of this ONE page fax.

Probably within an hour of this, I received a phone call from a representative of the group home (contracted by the local CMH) telling me that Max would NOT be eating or drinking in bed.

So they willfully went against doctor’s orders and THEN got him up just for meals.

The nurse was lied to when she was told that they (the company that owned the group home) had a “written policy” that residents were not to eat or drink in bed, as this was reasoned as a choking hazard.

The nurse asked for this written policy. This was never given over because one didn’t exist. Of note, Max has a hospital-style bed where the head rises; the knees rise – either together or separate and the entire bed goes up and down! Many people are fed in bed and given drinks… you know…. like people in hospitals who are ordered to bedrest. What it REALLY came down to is that there weren’t enough staff for someone to sit or stand there to watch him after he ate – to make sure that he didn’t aspirate or vomit (reflux) for 15 minutes to ½ an hour. Not enough staff….not enough staff…. and this is how it goes in group homes across the nation. Number one reason – the pay sucks and the companies who own the group homes suck even bigger.

Max was harmed. The damage was already done. During the time that Max has lived in this group home, he’s lost a huge amount of weight. No one knows why at this point. He eats and he eats well. It’s still a mystery to be solved, but the seriousness of this grew when the medical neglect happened.

Because doctor’s orders weren’t followed, Max lost even more weight that he couldn’t afford to lose – from muscle atrophy. This has also exposed him to increased risk of worsening skin breakdown in the future. He no longer has a “butt” or the padding that goes with it! It took over a month from the time this began until it finally ended in healing …. because they never followed doctor’s from the beginning. If they would have followed what “worked”, and kept him in bed until healed, he would have probably been totally healed in 3 days (historically).

I filed a recipient rights complaint against the group home. I would like to note that my intent was that the complaint was suppose to include the local CMH, because THEY are the ones that contracted with this home to provide care for my son. Therefore, it has always been my opinion that they were just as responsible (culpable) when it comes to the care he receives… or not. The buck stops there. But THEY bowed out and didn’t do what they were in place to do. His CMH worker (as a titled social worker) was by definition a mandated reporter. She didn’t do her job. She did not protect Max. But within this system is a “I’ll scratch your back, you scratch my back” agreement. It happens in the court system as well. It happens in politics all the time. It seems to be the way-of-the-world.

So over the next SIX MONTHS I went through the process of denial at the local level (they said no wrong-doing) through the local CMH. Then I filed an appeal of this at the local level (again CMH), which led to another denial by the CMH’s appeals committee (was I really surprised?).

The next step was to file an appeal at the state-level, which was also denied.

Of note, I contacted Adult Protective Services (APS) once I discovered what happened and the resulting damage that not following orders caused Max. Ultimately the county APS investigator refused to take additional information and pictures from me – that further demonstrated the medical neglect. He said that he “had all that he needed and he had interviewed everyone”. He interviewed staff – who were afraid for their jobs. I live in the real-world and yes it happens. People lie; don’t tell the whole truth, etc. And it HURTS the vulnerable and it makes the world a miserable place. The struggle is real.

I was shocked when he told me this. I sat there mortified. I had just been confronted with actual corruption within a broken system! My eyes were finally open.

After I filed a complaint at the state-level (DHHS), I received a letter from them acknowledging receipt of my complaint, with the statement that they would get all information regarding this from the local CMH and they would either uphold the original decision (which was a denial) or refer it back to the local CMH for further consideration and investigation.

Now WHY would this be referred back to the CMH that denied it in the first place?

Well…. because it’s written into our state’s Mental Health Code.

How’s that for fucked up?

Max never had a chance. The deck was and is still stacked against him and others.

I contacted three different attorneys. None would take on this case. Want to know why? Because it wasn’t worth it to them. Period. Max didn’t die. Max healed. Max wasn’t permanently (further) maimed, disfigured or harmed (I could argue that). The harm wasn’t ongoing (I could argue this too – he ended up in Physical Therapy that I initiated on his behalf). It wasn’t worth their time and they wouldn’t let me explain anything further past their “intake interviews”. And I am poor. In fact I am below the poverty-level on SSI/Social Security.

The next step after denial at the state-level would have been to take it into court. I couldn’t afford to do that and none of the advocacy organizations that were suppose to be in place to help people with disabilities and their families would take this on. This is the world that we live in now.

But I’m not giving up.

I DO believe that it’s important for those reading this blog to see the TRUTH.

When I’m able, I will add blacked-out documents to this post, because it’s really happening, and I know that it’s happening to others – especially to others who have no one speaking for them or advocating for them.

And after all, this is …

The Underground Advocate!

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