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 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.
It’s been many years of constant love and trying to do the right thing; always struggling with the powers that be … and thinking that others who were supposed to be in place to help, were also on that same page. Sometimes (okay rarely) I was right – but more times, very wrong
The unfortunate truth, in
being the parent or guardian or advocate for a child/adult (or for an
individual with a disability), is that this has always been basically
a flip of the coin. My real-life experiences have been long and
I have learned that laws,
regulations, policies and guidelines sometimes mean something and
sometimes mean nothing at all. It all depends on the commitment of
others. It depends on who the doctor or specialist is and “their
staff”. Sometimes their staff drop the ball, are rude don’t follow
through or just don’t get it – and it doesn’t matter because they
get paid anyway.
It depends on the special education system, whether teachers, therapists (Physical, Occupational Therapists and Speech Language Pathologists). And then there is the supervisors and administrators. You can have the best teachers and school therapists and if administration doesn’t support them to support your child, well…. much is lost if not entirely.
And we have next those at the county-level, namely community mental health, under the state auspices of control (control of funding and budgets), who are mostly social workers with a bachelor’s degree who come out of college not knowing anything on a moral or practical level. Forget any need to hone your craft or go beyond what they “learned in college”. I term them as “the gatekeepers”, who say “no” on a regular basis… because they choose to remain disengaged, ignorant or lazy.
They’re more involved in appeasing “the state” when it comes to how the money is spent…. or not spent.
I think that when these young and inexperienced social workers, when they start to work on behalf of others “less fortunate”, are too often taught (assimilated into a kind of “collective”) that it’s all about the money … as in don’t spend the money. So no wonder that there is a desensitization-process and a disconnection between what they should do and could do on behalf of people with disabilities – and then it’s a given, that those who are hurt the most are the most-vulnerable. That minority are those who are severely-multiply disabled.
I’ve heard just about every reason for “no”. They like to say they have a “lack of resources”; “We don’t have resources for that….”. We don’t have to “provide that support or service” because it’s “not written in a policy manual”. Or they outright ignore repeated attempts by parents, guardians, individuals to change the system, who are trying their best to get it to work for their person.
Why yes, “they” (those who are disabled) are PEOPLE. People are human beings. (I felt the need to clarify that one!)
First there were the medical issues and meeting those needs in keeping Max alive. He was a preemie, like many, many other babies before and after him. He was tiny and precious and okay, oh-so-cute – and my child with a precarious and unknown future.
I was actually afraid to love him in the beginning! I had been told by a neonatologist that an infant born as early as Max, was certainly at the highest risk of developing some huge problem with some major organ or system in his tiny body. Isn’t that the saddest thing ever? Being afraid to love your child? To become attached? Awful!
What to do? What should I know? I had never had a child with severe, multiple disabilities as his. I decided I would be brave and I knew that I loved him no matter what, and I knew that I would do whatever I had to, to protect him – against all odds. It’s been that way ever since.
This little guy came home on an apnea monitor, medication around-the-clock to keep his heart rate up. He was on oxygen. Very scary times. Absolute anxiety and this desperate feeling churned inside of me. What was this awful emotion? It was stress rolled up into a ball of fight or flight. I remember bathing him for the first time in the NICU, knowing as family members watched, that I had to look confident so that they wouldn’t be scared. I had to be brave for Max’s sake.
He couldn’t come home
until everyone in the family learned how to do infant CPR. And then
there was the throwing up and every little ounce of formula that he’d
drink was mostly coming back up. It was a huge struggle….
His life, his quality of life, has always been a struggle and very frustrating when people have not cared to do their jobs. I mean, why go into jobs (or fields related to the human condition) that require you to be resourceful, kind, patient, persistent and strong? These types of jobs aren’t careers, also in my opinion, but should be termed as a “calling”.
So I jump forward, many
years into the future and he’s grown up into a handsome young man
with a brilliant smile; with eyes that (must) express his both funny
and serious soul. And what is life like now?