No I Won’t Back Down: The Medicaid Syndrome

For folks with disabilities, it’s a harrowing time as the GOP holds the ol’ medical insurance globe in their hands and gives it a casual spin. Gotta get this bill passed. It is more important to prove a point — make progress in the new administration — accomplish something — euthanize every single thing President Obama accomplished — and promise to keep working on the resulting crap shoot, than to actually address the real issues: ie, People will die.

A lot of people.

One year ago today, I got to spend two hours with my younger sister. Amanda has Down syndrome. She had to move to Arizona following our Dad’s death in 2013. After a bitter court dispute over her guardianship between two siblings, she was awarded to the much older brother who didn’t know her too well. She went to Arizona to live.

One of his arguments was that she could be placed on his medical insurance. But Amanda already had complete coverage through both medicaid and medicare. So that argument kind of splattered on the road of false professions.

Unfortunately, it might become a reality now.

The reality of Medicaid is wrapped up in human rights. If a disabled person is covered, it renders them less dependent upon the whims of others who want to control them.

Amanda moved in with a past-middle-aged couple who had no clue what they were getting into. They did not know how to talk to her. They did not know her capabilities or what her innuendos meant. They took everything she said literally. {Did you shut the window? Amanda answers, “I think so.” For those of us who know her, this is a non-confrontational way of saying “no.” To them, it means yes. The window is still open. Amanda, who has always been a fundamentally honest person, in fact sometimes too blunt, is labeled as a liar.) Kind of like those ultra religious types who want to pluck out your eye if you lust after the wrong person.

Or something like that.

The result of this gross misunderstanding was to put the smackdown on Amanda. Make sure every move is regulated. Make sure she doesn’t have any ideas. She spent two months in Michigan, in 2016. During that time, she wanted to come and stay with me.

That’s a given. She and I helped our dad through Mom’s death. We clung to each other during this indescribable loss. She was born when I was eight. She was my little baby. We had walked alone through years and miles together, as only sisters can. I bought her school clothes. I would ask her advice sometimes on how to handle people or situations. We went to movies every week. We talked about boys and politics and religion and Dad and Mom and family. We talked about grief and happiness. We talked about what to wear to the cousin’s party. We talked and talked about regular stuff.

When the guardianship dispute happened, we wrote a book about it together. We called it The North Side of Down.

Amanda is 46 years old. She called me up in April and told me she was coming to Michigan and said she wanted to come and spend some time with me. It was a given.

Only, it was not. Now there is a guardian. Amanda was allowed to see me, but only under her Michigan caretaker’s thumb. (Another brother.)

I asked why. Well, the reply came complete with a bible verse, this was his time. “For every thing there is a season.” I would have time with Amanda in the future.

Uhmmm…. When?  Next year?

This did not go down well. I argued about it. I was accused of a temper tantrum. I asked about scheduling, and how this visit was going to happen when Michigan brother lives 3 hours from me. My emails and calls were ignored.

I argued nicely at first, but finally, I started getting mad. I received a self-aggrandizing, degrading note from a lawyer (a cousin) obviously intended to humiliate me, accusing me of all kinds of things like trying to take over the guardianship, and that I may try to kidnap Amanda if I took her anywhere. (!) This was ignoring the fact that in 2015 she had stayed with me and we had even left the Upper Peninsula together, and there had been no mention or thought of kidnapping. Why is this suddenly an issue? … My relationship with Amanda became swept up in a toxic system among jealous siblings with old, old issues who wanted to prove a point.

The cousin-lawyer’s note suggested that I contact the court and file a petition if I wanted to see my sister. So, that’s exactly what I did. What judge in their right mind would refuse this request? On June 21, there was a hearing wherein I had to ask permission to spend time with Amanda! To me the whole thing was utterly ridiculous. But Amanda was not brought to the hearing to speak for herself. She was not allowed to tell the judge about her wishes.

My petition was denied.

On this day last year, June 23, 2016 I was allowed to spend 2 hours at a Big Boy restaurant with my sister. During this time the guardian hovered a few tables away from us.

That was the last time I saw Amanda. She was taken back to Arizona two months later, with a complete disregard for her requests to spend time with me. I can’t even imagine how she felt, getting on that plane.

Since that time I have endured death threats, slander, vicious accusations and more crazy behavior from both this guardian and various other siblings, and a few extended family members. Amanda and I were cut off from even talking by phone for 9 months, wherein I had to file another petition (again denied although this judge confirmed that Amanda has the right to maintain contact with her family via phone) just to get in touch with her.

At this last hearing, Amanda again did not appear and this time the guardian didn’t even bother to show up. He sent a rather smug lawyer in his stead. She told me I had to stop filing petitions and writing blogs about Amanda. But I can keep on, “Doing the Down syndrome thing” if I want to.

That statement pretty much sums up the problem here, doesn’t it?

The questions arise. Have I tried talking to these guardianship people? Have I done this or that? Have I gone to Arizona?

Uhm, no. I do not have tons of extra cash lying around to make plane trips. Which, I am sure, is part of the problem. I lack cash, and a penis. If I had either or both, this would be going a lot better. There is no talking or reasoning with people who are okay with treating Amanda like a house pet.

This guardian is abusive. He is abusing not only Amanda, but he is abusing me too.

Herein lies an as-yet undisclosed problem with jacking Medicaid. How are people like Amanda going to experience any quality of life if they have to depend upon others for healthcare? This even goes for folks who are completely healthy. A disabled person would need a guardian with money. The state laws are already so screwed up. A person with Down syndrome is forced to spend years — YEARS apart from her favorite sister due to a spiteful, crybaby, narcissistic control freak guardian. This is already happening while she has her own coverage.

Why don’t we just make a law where people with disabilities have one more thing taken away?! Oh yeah man.

There I go again, doing the Down syndrome thing.

But it’s okay. I have permission!

Click this link for more information about how to Stop Guardian Abuse. 



About Nancy J. Bailey

Artist, author, bad karaoke singer. Woodsy ragamuffin. Mom of a horse named Clifford who plays fetch and paints with watercolors. He visits libraries and schools with me, to promote literacy and making the world a better place. Yes, he is house trained, no, he doesn't live in my house! I have written three books about Clifford. But my newest book, THE NORTH SIDE OF DOWN, is co-written by my awesome sister Amanda, who has Down syndrome. Her unexpected one-liner wisecracks can always make me laugh. If you make me laugh, you've made my day!
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