NEWSFLASH! Federal HUD rules need changing, STAT!!!

Yet more #SMH moments...  

We've been told my brother is one of Oklahoma's most chronic "mentally ill." I don't say that lightly. 
Jeff's been on Social Security Disability Income (SSDI) since he was 21 years old.  He's 49 now.  
Jeff has never had a substance abuse problem.  He does not use street drugs and never has.  
He is disabled strictly due to "mental illness" issues.  

Jeff has never owned a home.  

He cannot hold a job.

Jeff's delusions are not "fixed" by the current medical model of "treatment" 

(which is the forced-medication guessing game.)  

This family (mostly our mother) has never been idle.  

Mom has thirty years of records, documenting the tragic tale.

(photo: Mom Marilyn, Sister Jackie, and Jeff)  

Jeff's been homeless half his adult life.  

I don't know anyone that has lived a more difficult life.

  

Criminalized, yet he's not a criminal.  

He's been raped and victimized.

He's been shot up with every imaginable RX, none of which have done anything except tranquilize or make his delusions "fixed" (ie, permanent).  

I won't even get into the plethora of debilitating side-effects he endures.  

That's a blog unto itself.

He's been scorned, mistreated, bullied & beaten

by people that should know better.  

Over the decades, he's been starving, sunburned, shoeless, freezing, alone.

He has tried and tried to get away from the delusions in his head, 

running from "himself," hitchiking coast to coast on foot, and on and on and on...

Still, Jeff maintains a good heart, exhibiting forgiveness, empathy, kindness.  

He is amazing.

I feel like I'm describing Jesus on Good Friday...

except for being nailed to the cross.

#Pilate #Politics #PunishTheInnocent

THE WORLD HAS THROWN JEFF TO THE WOLVES

Oklahoma is where most of Jeff's family still lives.  It is HOME to Jeff, and where he LONGS to BELONG.  (I just realized how sad that sounds...but it is true.  He lives there, yet he longs to belong, there.)  How is it possible to be born, bred and live somewhere almost your entire life, and not feel like you belong?  I'll tell you; because, in a city that prides itself in being "nice," Jeff is "invisible."  

There's a big difference between in being "nice" and being "kind" - 

Kindness is rooted in love, 

niceness is rooted in fear

https://meditationmag.com/meditation-psychology/nice-vs-kind/

Jeff's usual daily routine is:  He gets up early, walks around downtown Tulsa, getting a meal, maybe taking the transit to an appointment somewhere... then walking back home, after dinner, laying his weary body down every night after a long, lonely, hard day.  Jeff can't afford cable TV or a computer.  Those are WAY too luxurious.  There is no money for any "normal" creature comforts.

Can you imagine?

These are true examples of the life of one of Oklahoma's chronically mentally ill.  

Yet, the "normal" I've just described isn't the half of what's currently going on.  

The process has been harrowing, for Jeff, 

and for those of us trying to navigate and improve such a failing system.  

I've been calling it the "Monster Mountain" we are trying to move.  

We are attempting the impossible.
~~~~~~~~~~~~~~~~~~~~~~~~~

We've always been extremely grateful for subsidized housing options, he has utilized.  Even though he's had over twenty addresses in the past four years, and our mom (who's in her 70's) has had to physically move him in out out of these apartments herself (sometimes up a flight of stairs), bottom line, there has been housing for him.  Lifesaving housing.  It's scary when Jeff has been homeless. The heartache has been eased by knowing that the Mental Health Association has a program that has given him a place to live.  Meagre, yes...but when someone has never even owned a car - having a place to sleep and feel safe is a third-world issue that has a first-world solution.  This is why I've been supporting MHA with charitable donations the past few years, "In Honor Of" Jeff.  Without housing, Jeff's life would be in grave danger.  It's been the answer to some most fervent prayers.  But now...to be clear, MHA has no housing for Jeff, due to a federal HUD regulation on the definiteion of homeless.  (see below).  MHA is a private organization, but they get federal grant money.  So, they abide by the HUD rule (law?).  

For context:  When Jeff was arrested in July 2016 due to a delusion not quelled by the forced medications the state was "treating" him with...the latest criminalization began.  I've documented much of that in past blogs.  It's been almost two years, and we are still dealing with the after effects of a system that punishes people for having a mental disability.  #smh

Jeff was thrown in Tulsa County Jail for 111 days of solitary confinement before being sent to the Oklahoma Forensic Center in Vinita on Nov 14, 2016.  He remained at OFC for over eleven months, then was sent back to jail in Tulsa to await trial, facing possible LIFE in prison, for trying to get away from more forced drugging.  I won't repeat information I've written about previously, but Jeff continued to decline before and after the arrest.  Now, even though we have accomplished what I was told was miraculous and is never done (ie, the charges being dropped) - it's still far from over.  

We've recently learned that due to being in a facility (jail and/or a mental hospital/crisis facility) for over 90 days the disabled person loses eligibility for subsidized housing due to a federal HUD rule, which defines required homeless periods and criteria (see link):

https://www.hudexchange.info/resources/documents/notice-cpd-16-11-prioritizing-persons-experiencing-chronic-homelessness-and-other-vulnerable-homeless-persons-in-psh.pdf
FROM PAGE 5:
D. Key Terms
1. Housing First. A model of housing assistance that prioritizes rapid placement and stabilization in permanent housing that does not have service participation requirements or preconditions for entry (such as sobriety or a minimum income threshold). HUD encourages all recipients of CoC Program-funded PSH to follow a Housing First approach to the maximum extent practicable.
2. Chronically Homeless. The definition of “chronically homeless”, as stated in Definition of Chronically Homeless final rule is:

1. (a)  A “homeless individual with a disability,” as defined in section 401(9) of the McKinney-Vento Homeless Assistance Act (42 U.S.C. 11360(9)), who:
   
   1. lives in a place not meant for human habitation, a safe haven, or in an emergency shelter; and
   2. Has been homeless and living as described in paragraph (a)(i) continuously for at least 12 months or on at least four separate occasions in the last 3 years, as long as the combined occasions equal at least 12 months and each break in homelessness separating the occasions included at least 7 consecutive nights of not living as described in paragraph (a)(i). Stays in institutional care facilities for fewer than 90 days will not constitute as a break in homelessness, but rather such stays are included in the 12-month total, as long as the individual was living or residing in a place not meant for human habitation, a safe haven, or an emergency shelter immediately before entering an institutional care facility;
2. (b)  An individual who has been residing in an institutional care facility, including a jail, substance abuse or mental health treatment facility, hospital, or other similar facility, for fewer than 90 days and met all of the criteria in paragraph (a) of this definition, before entering the facility;
3. (c)  A family with an adult head of household (or if there is no adult in the family, a minor head of household) who meets all of the criteria in paragraph (a) or (b) of this definition (as described in Section I.D.2.(a) of this Notice), including a family whose composition has fluctuated while the head of household has been homeless.

The shocking issue du jour, is - 
Jeff is no longer eligible for subsidized housing!
You heard me right.  No SHELTER for Jeff
because he was in jail for more than 90 days.  #SMH!!!!!!!!
*********************************************************************************

If you're not aware, 

there are no long term psychiatric hospitals any more.  Anywhere.  

None.

They went the way of good intentions and the Community Mental Health Centers.  

That's fine, until you realize that the statistics on mental illness are rising in this country.  

The statistics are also rising on the numbers of mentally ill on Social Security Disability Income ($$).  

It's a VERY EXPENSIVE problem to be wearing blinders about, Joe Public.  

AND... it gets more expensive (on many levels) with the jails being the new "psych hospitals."  

#ShameOnUs 

Suffering people with mental illness issues should NOT be in jail.  This is so backward I can't even find the right words.  And no "mental wing" at a JAIL is going to be able to take care of the delicate needs of those with psychiatric issues.  Quite the opposite, actually.  Why do we allow this?  It's a waste of tax dollars and solves nothing for the mentally ill.  This will only create more of the same.

SMH!

Living in America,

it's hard to believe 

so many people  

DO NOT

have their most basic human needs met.

Physiological needs are the physical requirements for human survival.  If these requirements are not met, the human body cannot function properly and will ultimately fail. They are the most important, and should be met first on the hierarchy of needs.  Without them, the other needs cannot follow up.  https://en.wikipedia.org/wiki/Maslow%27s_hierarchy_of_needs 

..... Air (Breathing)

     ..... Water

          ..... Food

               ..... Sleep

                    ..... Clothing

                         ..... SHELTER ....................................

It screams #obvious that human beings need #shelter ... a place to call #home.

One of my favorite quotes:  
"A society should be judged not by how it treats its outstanding citizens, but by how it treats its criminals."
~Fyodor Dostoevsky 

Again, the mentally ill are not criminals.  They should not be in jail.  
And when they are arrested due to their disability, 
HUD should not punish them further 
by taking away their RIGHT TO BASIC SHELTER!  

I am FUMING about this!!!  

LEGISLATORS??!!!!!  IS THIS ACCEPTABLE TO YOU?

If it is, then maybe you should RETHINK your position.

Please - 
Imagine a more human and better future.  
And moreso, MAKE the CHANGE 
to literally save the life of my brother and those like him.

*****************************************************

1. There is Another Sky - by Emily Dickinson
   
   There is another sky,
   Ever serene and fair,
   And there is another sunshine,
   Though it be darkness there;
   Never mind faded forests, Austin,
   Never mind silent fields -
   Here is a little forest,
   Whose leaf is ever green;
   Here is a brighter garden,
   Where not a frost has been;
   In its unfading flowers
   I hear the bright bee hum:
   Prithee, my brother,
   Into my garden come!
   
   
   **********************************
2. Jackie Welton DiPillo
3. 
   
4. Click here to help us make this change.  
5. Donations are TAX DEDUCTIBLE:
6. https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=TBBM3B72HWUYY

SWAB THE DECK: A numbers game. It's a TEST!

Hello, Oklahoma.

In the midst of the teacher walkout this week, this blog is aimed at enlightening folks about something that could potentially save the state millions of wasted dollars.  

Does this perk you up?  Grab your coffee and consider this...

What if there were a simple mouth swab test, covered by Medicare Part B with zero copay, that could be administered to the state's most chronic mentally ill, that would tell caregivers how that particular patient's body metabolizes their medications?  To clarify, a test that determines if a patient's DNA can tolerate any of the drugs related to mental health!  And on the converse, it would inform caregivers if the patient CANNOT tolerate the drug? 

I pose this question, due to the rising statistics of "mentally ill" since the advent of all the new pharmaceuticals and expanded diagnoses.  Shouldn't the numbers be going down?  To quote Robert Whitaker:  "Do the medications help people stay well? Function better? Enjoy good physical health? Or do they, for some paradoxical reason, increase the likelihood that people will become chronically ill, less able to function well, more prone to physical illness?"  

https://www.huffingtonpost.com/robert-whitaker/anatomy-of-an-epidemic-co_b_555572.html

In the life of my brother, whose life has been usurped by the grind of a system that has not even come close to curing him, and more truly has made his life a living hell... The forced medications have caused fixed delusions that tell him we are not his family, and adverse physical effects such as weight gain, diabetes, poor vision, and a plethora of scary symptoms specific to neuroleptics that could become permanent, like Akathasia  https://mddk.com/akathisia.html or Tardive Disconesia https://www.webmd.com/schizophrenia/tardive-dyskinesia-nord

God forbid!  

Jeff is so intelligent.  He has been smart enough to save himself from more misery by refusing drugs that are not "fixing" his thoughts, but that ARE causing him to be more disabled.

That brings me back to the original question.  Wouldn't caregivers WANT to know if their patient is getting worse due to their own DNA not being able to process certain drugs?  It seems like a no-brainer.  But sadly, it's being resisted by mainstream professionals.

Let's have some fun crunching numbers.  

Hypothetical situation:   

A mentally ill patient is in crisis.  The state facility administers a forced injection of Invega Sustenna®, which - depending on the facilty's contracted price might be $1,700-ish but could be as much as $3,100.00 for ONE SHOT that lasts a month.  

https://www.goodrx.com/invega-sustenna?kw=price&utm_source=bing&utm_medium=cpc&utm_term=invega%20sustenna%20price%7Ce&utm_campaign=invega%20sustenna&utm_content=Ad-Group_Price&msclkid=406b47ff72751292c0951d3d3ae5bf09

https://www.invegasustenna.com  

(INVEGA SUSTENNA® (In-VEY-guh Suss-TEN-uh) (paliperidone palmitate) Extended-Release Injectable Suspension is a prescription medicine given by injection by a healthcare professional.)

Many times this drug is used in conjunction with other RX (all very pricey).  

Let's take a low average, and say this monthly injection at a public trust hospital in Oklahoma costs $2,000.00.  The annual cost: $24,000 for one med.  Keep in mind, this pretend person is INPATIENT, so we know the cost of hospitalization is way more than the cost of one medicine.  Inpatient costs about $40,000 PER MONTH!  That x12 is $480,000.00!  Of course, most folks aren't inpatient a full year...but still, you get the picture.  Do the math.  

This is example of one person - a fiscal perspective.  

Furthermore, shooting low -

Let's pretend this chronic "mentally ill" person is inpatient for three months.  

That's a long stay, but there are many in Oklahoma that stay these lengths at state facilities.  

So:

Three months hospitalization x $40K = $120,000.00

Three months (example of one RX) Invega Sustenna® x $2K - $6,000.00

That's $126,000.000 for one patient, on one drug for three (3) months.  

If this patient were inpatient for six (6) months, double that to a quarter million dollars!  

The chronically mentally ill are not able to pay these bills.  

The hospitals absorb the costs.  

The state loses money.

How many patients and how many variable stories like this are coming out of 

OKLAHOMA?  

I can tell you more than fifty (50) in Tulsa, most of them getting criminalized 

(I'm not going into cost of incarceration, but it's astronomical).  

And if there are fifty chronically mentally ill in Tulsa, there are at least that many in OKC. 

50+50=100

Oklahoma's two biggiest cities. 

Let's play with these numbers.  

One hundred (100!) severe cases, costing $250,000 for six months.  

That's TWENTY FIVE MILLION DOLLARS for six (6) months!  

$25,000,000.00 !!!!!!!!!! 

for 100 chronic patients

for 6 months...in this hypothetical situation.

HALF A YEAR that can't be paid by the patient.  

Yeah yeah, pretend scenario, but it's realistic.  

How many MORE THAN 100 are there across the state.

The state is BROKE.  

A cost benefit analysis needs to be done 

to see how much money is being wasted, 

when the drugs may be making the patient worse 

and more chronic.

In comes the simple SWAB TEST...

www.genesight.com

https://assurexhealth.com

Developed at the Mayo Clinic, 

this test IS covered fully by Medicare Part B because it SAVES MONEY by giving the doctors information that could prevent causing damage to patients.

There are only five facilities in Tulsa that are registered with Genesight.  I was told that the Department of Mental Health and Substance Abuse Services (ODMHSAS) isn't interested in using this swab test, because not everyone has Medicare Part B, and some would have to pay for it.  They'd rather allow these most serious cases to possibly be damaged by drugs their bodies can't metabolize?  They are okay with the money being wasted not having this valueable tool to know if their "treatment" is helping or hurting?  That's what I'm getting from this.  

Why not offer it anyway?  I'll bet some would like to KNOW about it, and would be willing to pay to have this information that could save them years of heartache, pain and damage.

If even one patient is helped by this test, 

especially if it's free for that patient, 

this test should be 

mandated by the state!

It feels like discrimination.  Just because someone is SICK ENOUGH to qualify for Medicare Part B as a young adult, that means aren't offered a tool that gives information that could potentially help them get better?  Another level of backward, shameful, hard-to-believe-how-wrong-this-feels attitudes that fall under the "culture of arrogance" I mentioned in last month's blog.  

(BTW, I think AssurexHealth offers a sliding scale set payment according to income.  This chart was given to me in 2016, so not sure how current it is, but one can hope.)

If your loved one or patient isn't responding to any of the drugs listed below, please urge the facility and/or doctors get registered for this swab.  It would be worth paying the full price to KNOW if you're being damaged by the medicines you are being prescribed!

Let's get with it, Oklahoma.  This swab is easy.  We CAN turn this sinking ship around...with some new ideas, and new ways of thinking.  Time is of the essence.  What say you?

Copied from the GeneSight® Psychotropic Test page

Brand Generic
Abilify® aripiprazole
Ambien® zolpidem
Anafranil® clomipramine
Ativan® lorazepam
Brintellix® vortioxetine
BuSpar® buspirone
Celexa® citalopram
Clozaril® clozapine
Cymbalta® duloxetine
Depakote® valproic acid/divalproex
Desyrel® trazodone
Effexor® venlafaxine
Elavil® amitriptyline
Emsam® selegiline
Fanapt® iloperidone
Fetzima® levomilnacipran
Geodon® ziprasidone
Haldol® haloperidol
Inderal® propranolol
Invega® paliperidone
Klonopin® clonazepam
Lamictal® lamotrigine
Latuda® lurasidone
Lexapro® escitalopram
Librium® chlordiazepoxide
Lunesta® eszopiclone
Luvox® fluvoxamine
Mellaril® thioridazine
Navane® thiothixene
Norpramin® desipramine
Pamelor® nortriptyline
Paxil® paroxetine
Pristiq® desvenlafaxine
Prolixin® fluphenazine
Prozac® fluoxetine
Remeron® mirtazapine
Restoril® temazepam
Rexulti® Brexpiprazole
Risperdal® risperidone
Saphris® asenapine
Serax® oxazepam
Seroquel® quetiapine
Sinequan® doxepine
Tegretol® carbamazepine
Thorazine® chlorpromazine
Tofranil® imipramine
Tranxene® clorazepate
Trilafon® perphenazine
Trileptal® oxcarbazepine
Valium® diazepam
Viibryd® vilazodone
Wellbutrin® buproprion
Xanax® alprazolamZoloft® sertraline
Zyprexa® olanzapine

**********************

Jackie Welton DiPillo

#forJeff

obo: the family