Music, Uncategorized

Mantra for the Heavy Heart

I find this to have a calming and grounding affect on me – especially when I’m getting ready to make an important phone call or contact with someone, or attendance at a meeting – on Max’s behalf. It reminds me of WHY I must do what I have to. I am centered “here”.

You might not know this about me, but I don’t like conflict or confrontation – but I do what I do for Max’s sake. I decided after he was born that I would always be his voice. I’d be his voice until I was able to give him his own voice.

Max will have his Dynavox Tobii set up in January and I expect that he will be using this device across all environments. I’m looking forward to be able to give him choices for music and stories as well. I am so happy that he will have this opportunity. I realize that there are many nonverbal people in the world who have complex communication needs, that don’t have this. That make me very sad.

“I WILL FIND A WAY” is my Mantra in that regard. Whatever is needed to get the job done. It was tough this past week and I have a lot of work to do this coming one.

I like stepping outside of the real and present world, and pulling out of myself that part of my being that sees beyond the mundane in this world. I like to stand to the side and let the ideas flow.

It’s after midnight. It’s time to call it a day.

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Disability Awareness & Advocacy, Uncategorized

Down the Rabbit Hole – Lost, Dazed and Confused and yet…

Just when I think that I can’t take one more step forward, and that I’ve exhausted all avenues of escape for Max, there’s a glimmer of hope. When I say “escape” for Max, I’m talking about him having a good to great to excellent quality of life. That means to me his ability to “get out there” and have fun in the community, while he explores different areas of interest.

I’ve been in the trenches the past few weeks… or maybe more like in a fox hole, fighting with myself, while I fight with others.

EndhazomGurl

Why can’t they just do their fucking jobs? Ugh. It’s ridiculous.

More so, it’s insane that I have to FIGHT for what’s RIGHT. And I hate what this is doing to me as a human being. But more so, and this is THE most important thing – What it’s doing to Max.

I’ve been wavering, which is exactly the opposite of what I should be doing. But this is what happens along the way when you have a child/adult like Max, who is so disabled. It makes you weary and you have to take the time to re-coup.

It might “appear” (to others) that Max can’t do or communicate anything and therefore, nothing is expected. You know…. like…why don’t I just go away and STOP advocating for him? Why don’t I let the locals “be” to do basically nothing but warehouse him?

Is it because I’m a tenacious bitch? Or maybe I’m just here to make them do their jobs and make their lives miserable. Could be (kinda).

But no. I do what I do because it’s the RIGHT thing to do.

I’ve tried repeatedly to educate these people. For over three years I’ve brought up all kinds of issues. I’ve talked about his rights, the rules. I’ve been snarky. I’ve been nice. I’ve tried to come up with (reasonable) solutions and I get nothing in return.

I’ve tried with state advocacy organizations and apparently I or Max either live “outside” their jurisdiction or Max’s problems are not the type of problems that he can get support from them with.

But I keep moving forward, telling his story over and over again. I’ve tried to rectify his issues, while trying to keep the fires from raging to keep him from being burned.

And what was that about the “squeaky wheel gets the grease”. Sometimes, yes…. most times no – unless you find the right person.

I’ve now contacted his state representative, who sent me a HUGE packet of information to glean from. I LOVE searching through RULES and REGULATIONS and LAWS!!! To me that’s like the “key to the kingdom” of FREEDOM and LIBERTY for Max. It’s ammunition. It’s like being able to put that last puzzle piece into place and having a true work of amazing and beautiful art in front of me – created from all those little misshapen pieces.

I’ve been in contact with the Office of Recipient Rights, and there is an ongoing search for information (and hopefully a quiet investigation beginning? ).

And I’m still waiting to hear from another person at the state level when it comes to the question of Self-Determination and Max’s lack of that being offered.

I’m growing inpatient and I’m not sure at this point if the attention I’ve gotten (through email and phone) has really accomplished anything, other than temporarily placating me. We’ll see.

I thought it all was beginning to move forward….

And yet…. within the past 48 hours, the local DHS just tried to cut Max’s Health Benefits off. Can you believe it? For now, he’s safe.

I’ll write about that in my next post. What a shit show. Oh well, the ACLU is already in the county here, dealing with some other outlandish, discriminatory bullshit, so how convenient is that?

Off to war I go….

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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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Disability Awareness & Advocacy, Music, Uncategorized

I Won’t Let Go! I Will Defy Gravity!

By The Veer Union

“Defying Gravity”

Heavy is the heart I’m holding
(it’s holding me down)
With the weight of the world with no wings
(I’m stuck to the ground)

What was once a dream?
Is lost inside a scream?
I just need the energy
So I can fight the enemy in me

(I won’t let go, I won’t let go!)

I’ve been six feet underground
Fighting to be found
But I won’t let go
I won’t let go!
I’ve been locked inside a cage
Left to rot away
But I won’t let go
I won’t let go!

(I will be, defying gravity!
I will be, I will be defying gravity!)

This is not a revelation
(It’s what I’ve become)
This is just a destination
(To where I belong)

So I will right the wrong
And rise up to the sun
I just need the energy
So I can fight the enemy in me…

(I won’t let go, I won’t let go!)

I’ve been six feet underground
Fighting to be found
But I won’t let go
I won’t let go!
I’ve been locked inside a cage
Left to rot away
But I won’t let go
I won’t let go!

(I will be, defying gravity!
I will be, I will be defying gravity!)

(I will be, defying gravity!
I won’t let go… I WON’T LET GO!!!)

I’ve been six feet underground
Fighting to be found
But I won’t let go
I won’t let go!
I’ve been locked inside a cage
Left to rot away
But I won’t let go
I won’t let go!

(I will be, defying gravity!
I will be, I will be defying gravity!)

I fell into the fire,
Then stepped into the storm
The truth is but a liar
The day that it was born
I’ll erase the lies within
To find the truth again

I will be, defying gravity…

I will be defying gravity!!

There are those moments in life, when I become weary and heartsick. Tired of what seems to be an unending battle for every little forward step I try to take on behalf of my son and others. I feel so sore, with an ache that spreads down deep into my bones, and every movement brings pain … and I weep for all the wrongs in the world. I don’t understand (and will never understand) why people hurt people, when we’re all suppose to be ONE. We’re suppose to care about each other, to protect each other… to only do good unto and for each other.

I am resting right now – just a little while along this path called Life.

And then I will pick myself up again and move – one step at a time… down the road – until I meet up with YOU.

I hope you’re looking for me too.

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Disability Awareness & Advocacy, guardianship, Uncategorized

Update: Emily Delph – Still Suffering to Survive in Michigan.

Small in stature, with severe, multiple disabilities (cerebral palsy being one diagnosis), Emily Delph continues to be large in her determination to survive a broken legal (probate court) system in Michigan and currently inadequate medical care, on the west side of this state. Michigan is called the Great Lakes, but there’s nothing great about the medical neglect and yes, abuse, happening to Emily since she was taken from her mom. Emily is languishing and deteriorating in a nursing home – when she should be home with her mom, receiving the great care she’s always received. She should be home with her lights and toys, computer, movies, therapies, community outings, music; being engaged, entertained, happy, but now….. she has nothing.

There were NO neglect or abuse charges (there never was) against Holly Delph – and the court recognizes and everyone who has testified (10/24/2019) agrees, that before Emily was taken from her home and her mom (09/17/2019), that she was well taken care of. Her health was not just maintained, but she thrived when her mom moved to stop looking to Network 180 to do what they were suppose to be in place to do (provide access to her community), and Holly moved ahead with warm water (pool) therapy and getting Emily involved in her community herself – going to special events. I will include pictures and video at the end of this post.

What actually happened is based entirely on the dislike of an older white woman towards a young, black woman – even though that black woman is severely limited (total care) physically and is nonverbal – which made Emily Delph an “easy mark” for an entitled, prejudiced, closed-minded, cruel bully to move in and do her worst. This is the type of person who can’t stand that someone like Emily would even exist – especially within “her” world, and worse, in this woman’s mind, Emily’s mom is white! Apparently, THAT was the last straw for this woman. I can’t believe that this is 2019 and there are antiquated, ass-backwards people like that still out there – but eh, look at the POTUS that we have today, who incites the worst of the worst . It’s repugnant.

REMEMBER WE MUST CONTINUE TO RESIST HATE!

When Emily’s mom, Holly Delph, got up to speak on behalf of her daughter during the Michigan Attorney General’s Elderly Abuse Task Force Tour, (which has proven to be a huge failure and mostly a PR stunt) held around the State of Michigan and in Kent County, this privileged white woman was OFFENDED. Yep, she was offended. It gets worse.

This woman had set up shop in the back of the room, as a Representative of Area on Aging in this county. You heard that right. She was suppose to be there as a support and resource for families and individuals in need. She was quite the opposite.

She was the beginning of Emily Delph’s imprisonment and medical neglect. This woman’s false accusations, without proof, sealed Emily’s fate. This was further perpetuated by a probate court system and judge who handed over Emily’s “case” (person) to a state-appointed, public guardian named Karin Van Sweden.

This Representative of Area on Aging said that Holly was “irrational” and “hitting her head”, which is not true (witnesses who were there have been located and will be providing testimony/affidavits). Holly didn’t even find out about “the why” of any of this until she went back to probate court on October 24th! Until then, she had NO real idea what happened, although there were some thoughts on this related to other false and misconstrued statements made on social media – you know…. “if it’s on the internet, it must be true” bullshit.

And to-date, Emily still does not have her wheelchair, orthotics (leg brace worth $3500), toys or clothing, while she is being held captive at The Laurels of Kent County (nursing home). Michigan’s Licensing and Regulatory Affairs (LARA) has been called in to investigate. When asked by Michigan’s LARA where all of Emily’s things are, the court-appointed, public guardian commented that she “was afraid to bring in everything because they might get lost”. Just wow. Emily’s wheelchair is customized as are her orthotics (leg/foot braces) which provide for her positioning needs, so that Emily is held in comfortable, therapeutic positioning – to keep her from regressing physically. To my knowledge these items have yet to be produced. Who knows, maybe they’ve been sold. Who cares, right?

To further explain, for those who don’t understand how Community Mental Health in Michigan works (and believe me they all work differently, depending on which county you live in) and they all interact with the State of Michigan differently as well, I have included an explanation below.

Holly had tried to work with Network 180 for quite some time.

For those who are not familiar with Network 180, this is the same as with other Community Mental Health locations (county agencies) in Michigan. Sometimes mental health in different counties, go by different names. They are all in place under the Michigan Department of Health and Human Services. They are suppose to be in place to support and serve not just those with mental illnesses; children and adults with Autism; challenging behaviors; those dealing with addiction issues, but they are also suppose to work with individuals who are developmentally-disabled (and of course their families).

Network 180 is based in Kent County (Grand Rapids), where Holly and Emily live. Network 180 was suppose to provide services and supports to Emily and Holly in the form of respite and community living supports, but because (their reasoning) Emily was “so disabled”, they couldn’t find trained/experienced workers to come in-home and those who could accompany Emily out into the community.

Unfortunately, community mental health has long been lacking in the area of providing appropriate/necessary supports and services to those who ALSO have physical disabilities – especially to those who have the severest forms. Within the State of Michigan, those who are developmentally-disabled AND more severely, physically-involved (severely, multiply-disabled) are indeed the minority within the disability community.

Those who are more medically-fragile, non-ambulatory and nonverbal are the most silent of the silent minority. Therefore, they are easily taken advantage of and too often are disenfranchised and so are their families. It’s next to impossible for these individuals and their families to fight for supports, services and their civil rights – as most of their time is spent simply getting by and surviving. So therefore my reason for trying to explain some of this to those who “just don’t know” or have no idea what’s going on here and in the State of Michigan right now.

Whether any of us would like to admit this or not; to recognize that discrimination does exist… it most certainly does. To ignore it, is not just to condone it, but to perpetuate it. Over the years, Holly “learned” that it does exist – as Emily, adopted from Haiti, is black. My understanding and I have heard this from more than one person, is that this part of Michigan is pervasively discriminatory and prejudice against those who are not white. Absolutely, attention needs to be drawn to that fact and how inhumane and disgusting that is.

And so here we are…. Or rather, here is where Emily is at.

“They don’t follow protocol about basic cleaning around stoma. There are big reasons why this nursing home has so many fines.”
and
“Emily is dying. I’m no longer going to be nice about staff. The condition I found her in was horrible. These people cant even clean a PEG.. her leg was all twisted. Found a stink bug”.
– Holly Delph –

Better times…..

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Disability Awareness & Advocacy, Music, Uncategorized

I Will Never Surrender

Foo Fighters – The Pretender

This is one of my “fight” songs.

I have many.

Feel the music.

Fight for the people you love.

I’m posting this to remind myself and others – that speaking out on behalf of people in need, I know, is never easy. Sometimes it’s even dangerous – but when hate seems to be everywhere, we can’t rest.

We must be brave. We have to stand up, draw a line in the sand, and take exception to that hate.

We must tell the misguided, ignorant, confused, mean, cruel and evil to back the fuck up.

In anyway that we can, we must protect those who are less-fortunate and those who are considered “less than”, because I believe that THEY are the “most” of all of us. They decide who we really are as human beings. Let that sink in for a moment.

Before I begin to get deep, dark and dirty, know that at the heart of ALL that I do (say and write), is not just for my child’s sake alone – but for all of those who are struggling in a world of hurt.

I have found that in the quiet of the night, when my mind is not at rest, ideas come to me – and I accept that these thoughts come into existence almost like an outside force and as a way towards making the world a better place – in spite of those who build walls to keep people in and to also keep people out.

No matter how awful or sad it gets, we can’t ever give up. We’ve heard it said, It’s always darkest before the dawn. And so from time to time, as we wage what seems to be an all-consuming battle against the darkness, we must remain vigilant that we don’t lose ourselves as we make our way to the light of a new day.

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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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