Max doesn’t have Self-Determination in his life. His life is extremely limited. He is not given opportunities to make choices. It’s a same-day, same-shit kind of existence.
Max has a CMH “support coordinator” (they go by other names too….case manager, CMH worker, etc.), but there is no coordination of the supports that he should be receiving to be self-determined.
County CMHs (under the auspices of the Behavioral Health and Developmental Disabilities Administration- Michigan Department of Health and Human Services) are suppose to be a “system” that supports self-determination. They don’t. Go ahead, ask anyone who has an child/adult (especially one that is severely, multiply-disabled) in this “system”, how it works for them. There are some real human, real life problems out there, and the people that could make a difference, are doing nothing. They seem to have a lot of “meetings” and there’s no action. There’s no trickle-down effect. There’s no meaningful reaching out to stakeholders (individuals/families). They really don’t “do” self-determination. At least not without a fight from individuals and families. It’s exhausting.
Locally, several years ago, it WAS getting better. They were going in the right direction, and than people started to retire and “new” and younger people (social workers) came on-board at the CMH here.
They were inexperienced. They had absolutely no idea what they should be doing for those that they were suppose to be working for and on behalf of. They still don’t. They were not and did not want to become familiar with the uniqueness of those that they “support coordinated” for. They didn’t want to educate themselves any further as they progressed in their “careers”. They either never cared, in the first place, when they went into this particular field (human services) – or they were and are just lazy. Maybe “Social Work” sounded kind of good and easy, and something that they could learn all about in college, and BAM! off they went and they got paid to do whatever they were told to do (indoctrinated), forgetting WHY they were in the position that they were in. Forgetting or intentional, it’s all the same. It’s wrong on such a fundamental human level.
I take great offense when it comes to those who have such control over the lives of others – their very quality of lives; their comfort and safety; their happiness – and blow it off.
I’ve seen Max ignored totally between annual Individual Plan of Service meetings (IPOS). If I never said anything; if I never addressed any problems or issues, there would be NO communication at all. I absolutely hate the group-home mentality. Even if a person has no family or friends checking in on them, they have a right – yes a RIGHT to be treated with kindness and dignity and care.
They (CMH’s) KNOW about self-determination and they’re suppose to support that in the mental health system – as Max is someone with a developmental disability – but per usual, he’s even worse off than others, as someone that is nonverbal (has complex communication needs) and non-ambulatory, living in an antiquated living environment that still thinks of itself as providing the basics of what he needs to survive (be warehoused) and that all they have to do. The bare minimum.
That’s SO wrong.
I’m sure that this topic will come up again down the road, because I am trying to make positive changes on Max’s behalf, even as I see things worsening.
I’d really like to hear from other individuals and families; guardians and caretakers, care providers.
This is all about our most vulnerable citizens. Our friends and family members. All of our loved ones. It’s about those people who are elderly and the disabled who have no family or friends and are at the mercy of those put in charge to make sure that they are cared for. The elderly can be disabled. The disabled can be elderly. Some people are born disabled and others are disabled in accidents and by poor life choices. It happens. Be compassionate. Some are disabled by sickness and disease. No one asked for any of this. There should not be any blame. We’re all unique and are who we are through our life experiences. Namaste’.
EVERYONE isn’t that far away from losing it all – and being poor. Accidents and illnesses happen every day.
We all need to stick together and support each other.
Remember this – everyone in their lifetime will become disabled in some form. Let that one sink in. So…
Below are the beginning questions on the State of Michigan Department of Attorney General’s (AG) Consumer Complaint/Inquiry Form. I looked to the AG on behalf of my son. I had previously filed a recipient rights complaint and went through that process and appeals, locally and at the state-level, which turned out to be a total waste of my son’s time. Six months of his life gone and no one was held accountable for the harm and long-term damage caused. All involved and responsible, got to walk away with no consequences for the medical neglect that he endured and is still dealing with physically.
Here is the MI Attorney General’s Consumer Complaint/Inquiry Form here (to print out) and online here (to fill in online).
“Please be aware of the following:
– Complaints and inquiries become public records when they are submitted to the Attorney General’s office, and under the Michigan Freedom of Information Act, copies may be subject to disclosure to anyone who asks for them.
– A copy of the complaint will be sent to the business against whom the complaint is issued. An accurate company Fax number will expedite processing.”
(OMG, they actually want to EXPEDIATE this process!)
“ – A copy of the complaint may be sent to other governmental agencies.“
(So if your complaint is against a government agency, you’re fucked.)
” – Please be particularly cautious with information containing your Social Security number, credit card account numbers, etc. for security purposes. If you believe it is necessary to submit such information, you should mail that information and the corresponding complaint instead of sending it electronically.
– Do not use punctuation when providing names and addresses.“
Wow. Just wow. Nothing like putting a target on your back, eh? No guarantees of protection from retaliation. No protections at all. So if you’re making a complaint against ANYONE (could include a local, county, state business, agency or department) they get a head’s up – so that they can harass you, “threaten” you, retaliate against you in all kinds of ways.
I called the Michigan Attorney General’s office, without giving my name (of course), to ask about “protection against retaliation” if I filed a complaint.
I was told that I probably wouldn’t have to worry (right away), because whoever I was filing a complaint against wouldn’t know “immediately” that I was filing a complaint (unless you fax it – see above- so that the AG’s office can EXPEDIATE the process).
I was told that it would take at least a couple of weeks to fulfill any “freedom of information” (FOIA) request – without mention of the fact that “A copy of the complaint WILL be sent to the business against who the complaint is issued” – so then what? Sit tight?
Oh joy. That just makes me want to get right out there, jump up and down, and scream from the rooftops that my son was harmed. Not.
When I asked this question (about protection from retaliation), the person in the AG’s office had to leave the phone to go “ask someone” about it. Why? Because apparently, no one had ever asked that question before?! Fuck me! Really?
So WHY would anyone ever want to open themselves up to retaliation (which comes in many forms and degrees of severity), making their lives and the lives of their loved one more miserable (and potentially more dangerous)?
I’m curious to know how it works in YOUR state?
I’ve also learned, per personal experience, that the State of Michigan has stacked the deck against any form of justice or accountability/responsibility when it comes to their own legislature, under Michigan’s Mental Health Code.
This ONE paragraph in the decision letter that I received from the MI Department of Health and Human Services (how ironic) DESTROYED any hope of the truth coming out and overcoming evil, while proceeding to hold those responsible for the damage that they caused. It said:
“The Department will review the requested information and either uphold the original decision or return this matter to the (local/original) community mental health for additional investigation and consideration”.
WHY? Why would anyone think that this would be reasonable ANYWHERE, but especially in the United States of America? When it comes to full-disclosure; gathering ALL of the facts, with the expectancy that there would be no conflict of interest, where is the fairness and justice in how appeals are handled? Why would the Michigan Department of Health and Human Services/Department of Recipient Rights send this BACK TO THE LOCAL APPEALS COMMITTEE TO….. what? …. rule against a decision they’d already made? It certainly gives the appearance of protecting their collective backs – at the expense of my son who was neglected and harmed.
I’m betting that this has happened to many individuals and families in the State of Michigan.
The Michigan Department of Health and Human Services can do this legal “roundabout”, according to Michigan’s Mental Health Code. (when I locate this elusive mental health code, rule or reg, I will edit this post and add that part). I had it at one time, but I have stacks and stacks of records and files and I want to get this published.
The only way to change (the unfairness/conflict of interest/lack of protection from retaliation) is through legislature (I’m told) – which I’ve looked into and believe me, it’s not happening. I am still waiting two months out for my son’s state representative to get back to me. I am not holding my breath. I’m too smart (experienced) for that now.
Isn’t that sad? It’s no-man’s land out there. But I still keep on keeping on. I’ll figure it out, and when I do it will be all for the good.
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!
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
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?
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
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.