Disability Awareness & Advocacy, guardianship, Uncategorized

Update: Emily Delph – Still Suffering to Survive in Michigan.

Small in stature, with severe, multiple disabilities (cerebral palsy being one diagnosis), Emily Delph continues to be large in her determination to survive a broken legal (probate court) system in Michigan and currently inadequate medical care, on the west side of this state. Michigan is called the Great Lakes, but there’s nothing great about the medical neglect and yes, abuse, happening to Emily since she was taken from her mom. Emily is languishing and deteriorating in a nursing home – when she should be home with her mom, receiving the great care she’s always received. She should be home with her lights and toys, computer, movies, therapies, community outings, music; being engaged, entertained, happy, but now….. she has nothing.

There were NO neglect or abuse charges (there never was) against Holly Delph – and the court recognizes and everyone who has testified (10/24/2019) agrees, that before Emily was taken from her home and her mom (09/17/2019), that she was well taken care of. Her health was not just maintained, but she thrived when her mom moved to stop looking to Network 180 to do what they were suppose to be in place to do (provide access to her community), and Holly moved ahead with warm water (pool) therapy and getting Emily involved in her community herself – going to special events. I will include pictures and video at the end of this post.

What actually happened is based entirely on the dislike of an older white woman towards a young, black woman – even though that black woman is severely limited (total care) physically and is nonverbal – which made Emily Delph an “easy mark” for an entitled, prejudiced, closed-minded, cruel bully to move in and do her worst. This is the type of person who can’t stand that someone like Emily would even exist – especially within “her” world, and worse, in this woman’s mind, Emily’s mom is white! Apparently, THAT was the last straw for this woman. I can’t believe that this is 2019 and there are antiquated, ass-backwards people like that still out there – but eh, look at the POTUS that we have today, who incites the worst of the worst . It’s repugnant.

REMEMBER WE MUST CONTINUE TO RESIST HATE!

When Emily’s mom, Holly Delph, got up to speak on behalf of her daughter during the Michigan Attorney General’s Elderly Abuse Task Force Tour, (which has proven to be a huge failure and mostly a PR stunt) held around the State of Michigan and in Kent County, this privileged white woman was OFFENDED. Yep, she was offended. It gets worse.

This woman had set up shop in the back of the room, as a Representative of Area on Aging in this county. You heard that right. She was suppose to be there as a support and resource for families and individuals in need. She was quite the opposite.

She was the beginning of Emily Delph’s imprisonment and medical neglect. This woman’s false accusations, without proof, sealed Emily’s fate. This was further perpetuated by a probate court system and judge who handed over Emily’s “case” (person) to a state-appointed, public guardian named Karin Van Sweden.

This Representative of Area on Aging said that Holly was “irrational” and “hitting her head”, which is not true (witnesses who were there have been located and will be providing testimony/affidavits). Holly didn’t even find out about “the why” of any of this until she went back to probate court on October 24th! Until then, she had NO real idea what happened, although there were some thoughts on this related to other false and misconstrued statements made on social media – you know…. “if it’s on the internet, it must be true” bullshit.

And to-date, Emily still does not have her wheelchair, orthotics (leg brace worth $3500), toys or clothing, while she is being held captive at The Laurels of Kent County (nursing home). Michigan’s Licensing and Regulatory Affairs (LARA) has been called in to investigate. When asked by Michigan’s LARA where all of Emily’s things are, the court-appointed, public guardian commented that she “was afraid to bring in everything because they might get lost”. Just wow. Emily’s wheelchair is customized as are her orthotics (leg/foot braces) which provide for her positioning needs, so that Emily is held in comfortable, therapeutic positioning – to keep her from regressing physically. To my knowledge these items have yet to be produced. Who knows, maybe they’ve been sold. Who cares, right?

To further explain, for those who don’t understand how Community Mental Health in Michigan works (and believe me they all work differently, depending on which county you live in) and they all interact with the State of Michigan differently as well, I have included an explanation below.

Holly had tried to work with Network 180 for quite some time.

For those who are not familiar with Network 180, this is the same as with other Community Mental Health locations (county agencies) in Michigan. Sometimes mental health in different counties, go by different names. They are all in place under the Michigan Department of Health and Human Services. They are suppose to be in place to support and serve not just those with mental illnesses; children and adults with Autism; challenging behaviors; those dealing with addiction issues, but they are also suppose to work with individuals who are developmentally-disabled (and of course their families).

Network 180 is based in Kent County (Grand Rapids), where Holly and Emily live. Network 180 was suppose to provide services and supports to Emily and Holly in the form of respite and community living supports, but because (their reasoning) Emily was “so disabled”, they couldn’t find trained/experienced workers to come in-home and those who could accompany Emily out into the community.

Unfortunately, community mental health has long been lacking in the area of providing appropriate/necessary supports and services to those who ALSO have physical disabilities – especially to those who have the severest forms. Within the State of Michigan, those who are developmentally-disabled AND more severely, physically-involved (severely, multiply-disabled) are indeed the minority within the disability community.

Those who are more medically-fragile, non-ambulatory and nonverbal are the most silent of the silent minority. Therefore, they are easily taken advantage of and too often are disenfranchised and so are their families. It’s next to impossible for these individuals and their families to fight for supports, services and their civil rights – as most of their time is spent simply getting by and surviving. So therefore my reason for trying to explain some of this to those who “just don’t know” or have no idea what’s going on here and in the State of Michigan right now.

Whether any of us would like to admit this or not; to recognize that discrimination does exist… it most certainly does. To ignore it, is not just to condone it, but to perpetuate it. Over the years, Holly “learned” that it does exist – as Emily, adopted from Haiti, is black. My understanding and I have heard this from more than one person, is that this part of Michigan is pervasively discriminatory and prejudice against those who are not white. Absolutely, attention needs to be drawn to that fact and how inhumane and disgusting that is.

And so here we are…. Or rather, here is where Emily is at.

“They don’t follow protocol about basic cleaning around stoma. There are big reasons why this nursing home has so many fines.”
and
“Emily is dying. I’m no longer going to be nice about staff. The condition I found her in was horrible. These people cant even clean a PEG.. her leg was all twisted. Found a stink bug”.
– Holly Delph –

Better times…..

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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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