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, Mental Health, Uncategorized

In Defense of the Vulnerable – How the Complaint/Appeals Process in Michigan Makes Life Worse

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.

And so…

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.

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