Disability Awareness & Advocacy, Uncategorized

A Child is Born – Part One

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 many.

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?

END OF PART ONE

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Disability Awareness & Advocacy, guardianship, Uncategorized

Her name is Emily

Disclaimer: Some of the exact dates are in question at this time, so these are approximate. This article was not totally ready for publication, but has become necessary at this time, and is life and death – in getting the word out there – For Emily’s Sake and very life! And so it is necessary. As this travesty has now become public, and with her mother’s permission, I am proceeding to do so.

On September 17, 2019, Emily Delph, age 25 years (adopted from Haiti as an infant), weighing 75 pounds as the small person she is, and severely, multiply-disabled, was taken from her mother, Holly Delph, by a Michigan state-appointed temporary guardian and left abandoned at St. Mary’s Hospital emergency room.

When the temporary guardian, Karen Vansweden, and the officer arrived at Holly and Emily’s home, this court-appointed, temporary guardian told Holly “not to try to see Emily”. There was no neglect. There was no abuse. There were no charges and there was no paperwork handed over to Holly.

A court date has been set to go back to Probate Court on October 24, 2019…. if Emily makes it until then or there isn’t irreversible damage caused by waiting that long. It’s possible that Emily might never fully recover from this assault on her person by this rogue court and paid guardian. What were they thinking?!

Holly has never neglected or abused her daughter. In fact, every life decision that’s she’s made since Emily became her daughter, has been on Emily’s behalf and in her best interest. Holly loves Emily.

Upon admittance to St. Mary’s Hospital in Grand Rapids, Emily’s health was reported as excellent. The hospital staff called her mom who was listed as the emergency contact and asked what to do with her!

Where was the temporary guardian?

Anyone with any knowledge of Emily would know that she couldn’t be just dropped off at an emergency room and abandoned. That’s neglect of a very vulnerable person and it greatly endangered Emily’s health and life. Sadly, her mother was powerless to stop it or step in at that time because of the temporary guardianship. Kent County Probate Court in Michigan and the judge that appointed this temporary guardian, should be held accountable for the probable tragedy that’s playing out right now.

Emily is not only severely, multiply-disabled, she has complex needs and is medically-fragile. Her primary diagnosis is cerebral palsy. She is nonverbal and total care for all of her basic and personal needs.

“I was told by Karen Vansweden not to go. I was called by St Mary’s Hospital. The Physician’s Assistant called me and said she was in great shape. They wanted to know how to feed her. The guardian just dumped her. I have no idea if I’m allowed. Emi has never been in a hospital ever for an illness. Only orthopedic stuff. I was always there. My somewhat slow attorney my son is talking to is trying to get real answers. Again no neglect or abuse. It’s a Michigan guardianship thing So flu season is here. Emily is healthy in a hospital costing the tax payers lots of money. If she gets sick, its state-sanctioned euthanasia. Again the guardian dumped her.”

Of course, now this temporary guardian will get a bigger paycheck this month because Emily was dumped at the emergency room and admitted to this hospital unnecessarily. I guess that this guardian gets paid to dump off disabled people whenever and wherever and with no accountability or oversight.

On 09/18/2019, Holly was advised through her attorney, that Emily would be discharged to a nursing home that day or the next until the temporary guardian could find “another facility”. It was unclear whether the guardian or the hospital had made that decision. It was then that Holly was advised that she could see Emily “at the new facility” (wherever that was going to be).

By 09/21/2019, Emily still remained at the hospital and at that time, Holly was able to visit in the evenings. There was a struggle with her food as Emily has a very sensitive stomach and the guardian wouldn’t approve what she had been eating when she was at home with her mother who cared for her. There is a particular kind of formula that provides nutrition for Emily. Her mother was not allowed to intercede and care for her as she had at home.

By 09/22/2019, Emily’s condition started to degrade. She became impacted, getting sores, her calories were cut and she received no therapy, as she was previously receiving before she was taken. Her brand new specialty leg brace ($3500) and shoes came up missing, and although her mother brought in her chair (for positioning and mobility), she was not allowed to sit in it. It gets worse from there….

On 09/26/2019, Emily was taken to Metron of Lamont (nursing home) basically to languish and die from starvation, pneumonia, bedsores, being impacted, infections. And then…

 

On 09/29/2019, Emily was re-admitted to St. Mary’s Hospital.

“I went to visit because I was told I could work with her. Emily is in bad shape. My intentions were to get her in her chair I brought. Give her a real shower. The charge nurse didn’t understand the food I brought was the same food brand they were already giving that was from me earlier in the week. She would not disconnect the IV for a short time, so I could put her in a chair. They were dumb. All of Emily’s night lights were gone. Again her $3500 orthotic was not there. The state-paid guardian refuses a care conference. Emily cried when I left but I couldn’t stay because my distress of the stupidity of it all was overwhelming. They are euthanizing Emily. “

As of several days ago, Emily is now at a place called the The Laurels of Kent. This is the website url. Their rating is poor. https://www.google.com/search?q=Laurel+of+Kent+reviews&ie=&oe= Read all the reviews.

#bringemilyhome #newsworthy #wwmt #wood #wzzm #wxmi #rockfordmichigan #ncaa #ada #sharethis #isthisreallyaboutmoney?

And finally but not least of all, here is a personal appeal from Emily’s Mother, Holly Delph, on her daughter’s behalf. Please share this post/video, so that Emily can come home and be with the family that loves her.

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