Help Bring Amanda Home
$1,145 raised
6% of $20k goal
23 contributors
10 Days left Ends Jun 1, 2019

Against Her Will

My sister Amanda is starving in mind and heart. She needs help. Amanda is a bright, funny, caring person trapped in a system that cages people with Down Syndrome. The system is interested only in providing food and a roof. The rest of life that we take for granted at age 48 -- choosing our friends, visiting relatives, ordering from a menu, sleeping in, which church to attend (or not), seeing a movie, choosing our clothes, taking a nap, grieving loss, watching TV -- all the million things, the freedoms in life, are not considered relevant for the disabled.

In 2013 our Dad died and two of our siblings went to war over Amanda's guardianship. Our older brother Ted won and moved Amanda to Arizona, far from our home state of Michigan where she has lived her whole life.

Since then, the brother has become increasingly more controlling over Amanda, to the point where he cut us off from talking by phone for nine months. (I had to get a court order to resume contact.)  I have offered various solutions to try to resolve the problem, but it isn't getting better. He thinks Amanda is "not intelligent", and he does not listen to reason.

I have exhausted all other avenues of help for her. Guardianship is a bad deal and Amanda is trapped in Arizona and she wants to come home. That's the bottom line.

I have to raise a pile of money for legal fees for Amanda, because her case is transferred to Arizona. Amanda has asked me for help. So, here goes...

 

 

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More About Amanda's Story:

Amanda is super bright and has a hilarious sense of humor. She even co-authored a book with me, "The North Side of Down." It tells about what it was like to grow up in a big family in the Upper Peninsula of Michigan, what it was like to have Down syndrome, and what it was like when two siblings went to war over custody when our parents died. One of our favorite pastimes was, "Girl's Day Out" when we went to movies and out for pizza. Amanda and I have been doing Girls Day Out since I moved back to Michigan in 1988. It is a regular thing. Our Girls Day Out is even featured in a story I wrote for "Chicken Soup for the Sister's Soul, Volume II".

I mention the book not to promote book sales. The book will never make us rich. I mention it because it shows what a person with a disability is capable of. The remaining siblings are very dysfunctional, each of them riddled with issues, and all very angry about our book, but this is not about them. It is about Amanda.

We were very proud when "The North Side of Down" won an award, an Honorary Medallion from the Book Reader's Appreciation Group. We split the royalties, 50/50.

We were less proud when it became obvious that Amanda's siblings did not respect her civil rights as a human being.

In 2013, our father died and the court in Chippewa County awarded guardianship to our older brother, Ted Bailey.

Ted won the guardianship following a dispute with our sister Robin. (That's in the book, too.)

I did not attempt to get the guardianship because I was not in a good economic position to look after Amanda. I had been caretaker for her and both parents and the family home was sold. It left me temporarily without a home. I supported Ted's guardianship even though he didn't really know Amanda (once telling me, "Amanda is not intelligent" -- he could not be more wrong). Ted lives in Arizona. He is 18 years older than Amanda, did not grow up with her and had never lived with her.

Amanda has lived in Arizona for 6 years. I was always her first choice for guardian and recently she has been asking me to get her out of there. She is dreadfully homesick, wants to come back to Michigan and live with me. 

I wish I could say that her life is okay in Arizona, but it is not. Her current situation is becoming more and more stifling. In 2016 her guardian began to deny me visitation during trips to Michigan. His reasons kept changing. He said he was worried Amanda wouldn't want to go back to Arizona. He said Amanda had bad habits. Then he started blaming me instead, saying I was not good for Amanda and recently began accusing me of stalking her (!)

I have never visited her in Arizona. I write to her every week and call her about twice a month.  Amanda and I were even cut off from speaking by phone for nine months. I kept updates on my blog.

Twice I have had to petition the court in Chippewa County in an attempt to get visitation with Amanda. Both times my petitions were denied, although the second time the judge granted me a court order to talk to her by phone.

Despite my repeated requests, both of these judges refused to meet with Amanda or speak to her to assess her personality and find out what she wanted to do with her own life.

Amanda has fewer rights than a minor child. Even a child gets to talk to the judge.

Of course, the guardian did not bring her to the hearings. He did not want to give her a chance to speak her mind.

It gets worse. Amanda is going through bouts of grief and depression. Her morale is beginning to fade. I am starting to get really worried, so it is time for me to do something more than just wait and try to talk sense into the guardian, and hope for the best. I have to help her.

Let me add that I have run the gauntlet of legal help. I have asked nicely. I have asked not so nicely. I have contacted congressmen. I authored a bill hoping to change guardianship legislation. I got Amanda and me an invitation to appear on the Dr. Phil show! Most recently I offered the guardian a mediator so we could discuss the situation like adults, for Amanda's best interests.  The guardian refuses to participate in anything that may help the situation. Legally, he doesn't have to. I have contacted umpteen thousand sources and the thing I am learning about guardianship is that it is anarchy. There is no law mandating that a guardian has to let the ward do anything. The guardian has complete control. Amanda can't go to the bathroom without permission. 

Guardianship has to change. But it is going to take time, and Amanda may not have that much time. So my focus is on Amanda.

Amanda has a disability. She cannot drive a car or make change. But she has more emotional intelligence than many of the people I know.

The thing is, Amanda has a lot to contribute to society. She would go on Dr Phil and talk freely about what it is like to have a disability. Her humor would make her an instant hit. She is a great ambassador with plenty of her own ideas. If she wanted to, she could change the world. Or, she could stay home and enjoy her life. She should be given the freedom to choose.

The worst part about this "smothering" of Amanda is the fact that, when separated from key individuals, people with Down syndrome can develop dementia. 25% of people with Down's do get Alzheimers or some form of dementia. They tend to have a shortened lifespan. Most only live into their fifties.

Separating Amanda from me could be affecting her health, in the worst possible way.

I believe our brother is not able to cope with the responsibilities of guardianship. He has never raised a kid. Punishment is the only alternative some people understand. He just doesn't get that Amanda's intellectual disability does not mean she cannot comprehend what is happening, or that she cannot feel deeply disappointed. He doesn't understand that Amanda is not a complainer. He doesn't know her well enough to know that rather than hurt his feelings, she will suffer in silence. This may be elective ignorance on his part. But that should be his problem, not Amanda's and not mine.

Amanda may not have a lot of years left. She deserves to have them be good ones. She deserves to be back in her home community where she lived for 42 years, with people who know and love her, doing Girls Day Out and bowling and having a productive life. Not sitting in Arizona, grieving for lost family members with hyper vigilant guardians who squirt her with water and hit her with paper towel tubes and scream at her and eavesdrop on her conversations and talk down to her like she is a dog. 

I have found a lawyer that I think might be able to help us. But she is expensive. So I am trying to raise money to save my sister. $20,000 seems like a lot of money. It feels like a mountain of money. And it is going to cost at least this much. The lawyer asks for a $10,000 retainer. She costs $300 per hour. She is my choice because she has a child with Down syndrome.

If I can't raise enough to pay her, I will use the funds to file a petition in the Arizona court myself (like I did in Michigan) and try to have the guardianship at least amended to improve Amanda's lifestyle. The Arizona court may be more progressive in terms of listening to the ward.

I will have to travel from Michigan to Arizona to attend the hearing. I am not rich. I am just worried about my sister and I have done everything else I could think of. Crowdfunding is a last resort.

Thank you for reading our story.

 

 

 

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