Disability Awareness & Advocacy, Group Home, Mental Health, Music, Uncategorized

Another Brick in the Wall

In Max’s life – “Another Brick in the Wall” translates into “Another Roadblock in Life”. The constant assaults on his individuality and integrity and personhood continue. It’s moments like this, that I wish I could sit across the table from Max, we both drinking a beer, while talking and laughing “about life”. I want to hear about his hopes and dreams. I want to know how he’s really feeling.

Then I’m dragged back into the reality of it all. All of this real-life crap that surrounds him. It’s been never-ending bullshit lately. I’m feeling powerless. I hate that feeling, and usually when I get to this point (it does happen sometimes), it spurs me on and makes me even stronger… eventually. Ha!

KORN

I meant to post more regularly (I have a lot to say) – with proof that Max lives and not merely exists in a world that doesn’t recognize his humanity, but life can be cruel. I got distracted by “life”. I had to take some time to re-group and make contact with people in-the-know. This is how it is when you have a child/adult with multiple, more severe disabilities. Networking and finding resources are EVERYTHING! It’s a fact in living this kind of life.

I know that it’s been awhile.

This week I visited him in his group home. When I walked in, he was sitting in front of the tv in the common living room. Two other people were sleeping in their wheelchairs. He was slumped in his wheelchair and needed to be pulled up. No one noticed except me. He was drooling so much that the front of his shirt was sopping wet. He had a look on his face that suggested he was disinterested in whatever he was suppose to be watching on tv.

At first he looked at me, like he really wasn’t seeing me. And then, he smiled as I used his shirt to wipe the drool off his chin. He needed his hair combed. He smelled. He only gets a shower on 2nd shift every day. Apparently, it doesn’t matter if he gets up in the morning, after having a bowel movement and sweating all night, that maybe someone should have given him a good bed bath in the morning?

I guess that’s not a part of the routine in this group home. It’s probably that way in most, if not all group homes. They’re very big on following the routine for “the whole”. There is no individuality in that regard. Or maybe it’s all about who is verbal and the loudest. Therefore, Max is not verbal and not the loudest. Max is also non-ambulatory, so no one has to go after him if he runs. Then it becomes survival of the fittest. Did you get that?

And I learned yesterday, when I contacted his “support coordinator” through email (I like creating paper trails) that they’re all about discouraging me from commenting, suggesting, complaining. She said that staff did engage him throughout the day but went onto say that basically, he “couldn’t have all their attention all day”, etc.

I want to make something very clear here. More times than not, it’s not the staff that is the problem (although there are those few). In fact most care providers work short-staffed, and are forced to work long hours – mostly 12 hour shifts – for very little pay (that needs to change). I’ve seen them exhausted and disrespected. I also know that they have their own families. In Max’s case, more than a few of his care providers have included him in their own family gatherings, and I’m grateful for that – as he has no close family living near him.

My problem is with the company that they work for and their managers. My problem is also with the local CMH who should be monitoring his care and working in partnership with myself and keeping me informed. They do the opposite. Where they should be diligent in their oversight and transparent, they avoid any communication with me unless it’s absolutely necessary. They don’t continue to educate themselves and they can’t see another way; the way that it’s suppose to be in creating a safe, happy, meaningful life for my son.

I’ve been stonewalled. I never see anything documented in his notebook and neither am I offered a look-see or a verbal report. I don’t get to hear, as in, “today we used small toys for Max to pick up and drop into a container, to maintain/increase his fine motor skills”. There’s no running commentary, ever.

They inform me of NOTHING. All I know is that every time I go over there, he’s sitting in his wheelchair doing nothing, except watching tv. Or laying in his bed watching his tv / listening to talking books (which I set up for him with the Library for the Blind). Note: I told the group home manager that books on tape could be easily acquired and set up for all the residents there (it’s FREE), but did that happen? No.

Every observation/comment that I made in writing in this email was countered and I was basically called a liar and my concerns belittled or questions unanswered. I WANT to reply back…. but won’t because it’s wasted energy and it’s all frustrating the hell out of me right now. (I need to think about how to effectively deal with this.)

She said Max didn’t smell… Believe me, he did. Perhaps,“that smell” is normal for her in the group homes that she visits. She only sees Max for 15 minutes 3x month. And NOW I know that every time she sees him, she doesn’t really “see him”. Excuses. They all have these pitiful excuses and I’m made to feel like I’m an unreasonable whiner. Fuck that.

I know “they” (CMH/Group Home Management) wish that I would go away and not visit him at all. I know they wish that I would just shut up and not care and let them NOT do their jobs; that I would be like other family members who drop of “their person” and walk away.

But I won’t. Fuck them.

Max received a Dynavox Tobii. It’s all based on eye-glance. Think of what Stephen Hawking used to communicate. Someday he WILL tell me what’s happened to him and what his wants, needs, hopes and dreams are. Someday he will have his OWN voice, and there won’t be anymore cop-outs, lies or manipulating from other people who would continue to get in his way of being self-determined.

When he starts using this, over time, he will get better and better. It may take a long time and I’m sure that both he and I will be discouraged – if staff isn’t trained and/or refuse to make this device accessible for his use (Dynavox Rep and SLP are coming to his home to set up everything, program the device and train staff) when I’m not there, but you know what?

Fuck them.

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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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