Ohio Wages War Against Disabled Citizens and Their Caregivers (part three)

Dear Representative Robert Sprague,

My name is Peggy Cooley. 

I ADAMANTLY oppose the elimination of Independent Providers (IPs).

Peggy & her daughter, Kit

I am the mother and legal guardian of my daughter, Kit, who lives with multiple special needs: Cerebral Palsy ( spastic quadriplegia, cortical blindness and a seizure disorder. Kit is on a DODD waiver and continues to live with me and her father in our home. She is a beautiful "social butterfly" and she shares her joy for life with everyone she encounters. She is currently 23 years old and participates in an active and vital adult activity day program, five days a week, along with 20 other "friends".

Kit feels safe, loved, secure and respected by her five Independent Providers, most of whom have been her caregivers for over a DECADE. These caregivers are like family to us. We love, respect and trust them to care for our child. These wonderful caregivers take Kit out in the community; including meals out at restaurants, trips to the shopping malls, out for walks in the parks, etc. Kit is also friends with other members of her caregivers families. Kit has benefitted in every aspect of her life because these caregivers are a big part of her life. I can't imagine ever losing them or of ever losing the FREEDOM TO CHOSE who works with Kit in our own home.

I can never go back to using an agency and none of Kit's providers will ever go back to working for an agency. Her caregivers worked for years at an agency for the sole purpose of providing care for Kit. I recruited, trained ( a 6 to 8 week process), and did all of the scheduling of hours. They NEVER worked for any other agency client the whole time that they were with the agency. At some point the agency cut their already low wages, became ridiculously intrusive in our home and ignored my requests that they stop taking Kit's vital signs, as there was no order from her doctor that this was necessary. The agency nurses would end up scaring Kit and then she would cry and end up biting her wrists out of frustration. I was told, incorrectly, by the agency that I would lose the ability to bill hours for the aides if I did not allow them to take vital signs. It got to be so stressful for me  that all of our caregivers agreed to go through the process of becoming Independent Providers to reduce the stress I was feeling. I gave the agency notice that this was happening and the agency (Maxim Health Care) tried to extort $5000 dollars from each of them for allegedly being in violation of a "non-solicitation agreement. My husband made a few phone calls and within 72 hours an attorney from a law firm, hired by Maxim, contacted us and his first sentence was " tell us what Maxim needs to do to make this go away."

The white paper written by the Ohio Health Transformation department  was the most disturbing document I have ever read. It was a blatant attack on the 13,000 Independent Providers and came as a total shock to me. IT SCARED ME !!!!!  I was outraged by the contents of this document and I was INSULTED that Governor Kasich and Mr. Moody could ever assume that I would be so naive and uniformed not to see through their scam.!!  This is disgusting and outrageous behavior by the Kasich administration, PLEASE stop this madness !!!  

Thank you for the opportunity to share my feelings on this issue. I pray that you and the other members on the Human Services Committee will do the right and ethical thing and have the proposal to eliminate Independent Providers removed from the budget.

Respectfully submitted,

Peggy Cooley

Kasich's fraud prevention plan poses dangers to disabled citizens

To learn more about how Ohio's Governor John Kasich's plan would impact people with disabilities, take a look at this article "OHIO GOVERNOR KASICH'S PROPOSAL WOULD INSTITUTIONALIZE PEOPLE WITH DISABILITIES."

Then, when you are sufficiently disgusted, sign the petition below and share this post on your social media outlets. Thank you!

John Kasich fails disabled and elderly Ohioans

One day this week my PCA (Home Health Aide) got a call on her cell phone while she was on duty at my house. Generally, I prefer my PCA’s do not take personal calls while on duty but I could see such concern wash over her face, I told her to answer it.

My house is small so of course, I heard the conversation that followed. It was my PCA’s other Client calling her to say she had been left abandoned by the PCA who was supposed to provide service to her that day and she was hungry and thirsty…unable to prepare food for herself.

That other PCA is not a criminal. She just didn’t have gas in her car to get to work because she has not been paid since the premature implementation of MyCare Ohio.

Hearing this conversation made my heart sink into my stomach. That could easily be me that was left without basic life sustaining sustenance because my Caregivers have not been paid consistently either due to MyCare Ohio.

Then I started to feel guilty because my PCA has just helped me prepare a delicious organic, gluten-free meatloaf dinner. It made me sick to look at it, knowing someone with similar circumstances was going hungry.

In a Hulk-like transformation, the Gimp Avenger in me came out…pushing emotions aside and formulating a plan-of-action.

Step One: I had my PCA prepare a plate of meatloaf for this disabled stranger (PCA’s are not allowed to disclose their Client’s personal information) and asked her to deliver it to her immediately. I also armed her with contact information for the Universal Healthcare Action Network, which is a nonprofit advocacy group that is intervening to assist victims of MyCare Ohio.

Step Two: Begin drafting a public statement to Governor John Kasich. Prior to the launch of MyCare Ohio Governor Kasich and Greg Moody, Director of the Health and Transformation Office, had a whole lot of wonderful things to say about MyCare Ohio. Once it launched though, they fell silent on the matter. When my statement is completed, I will post it…might possibly make a video as well.

I am not sharing this story with you because I think I deserve a gold star for sharing my dinner with a stranger. I am sharing this story to bring attention to the fact that there are disabled and elderly Ohioans who are likely going without dinner because of MyCare Ohio. That is abuse.

TO BE CONTINUED

Ohio, stop abusing disabled people and their Caregivers!

Dear Readers. I know you haven’t heard from ‘The Gimp Avenger’ for a while. This doesn’t mean that discrimination and abuse of people with disabilities has ceased. I was simply waiting to see how bad things were going to get, especially here in Ohio, before I suited up for battle.

With claims of streamlining, expanding, and improving services for those who receive both Medicaid and Medicare, MyCare Ohio was created. Under MyCare Ohio, Consumers like me who receive benefits from both entities were described as having the option to choose which HMO we wanted to utilize for Case Management services. I did not find this to be true.

All phone numbers I was given to sign-up with CareSource (my 1st choice) lead to dead ends. One number led me to a recording that gave me the option to by a Wal-Mart gift card. When I declined, I was disconnected.

Against my wishes, I was assigned to UnitedHealth Care. My experience has been downright abusive. It has taken a month for one of my three Home Health Aides (Independent Providers) to get a paycheck. Another should be getting a check by tomorrow. The third however, isn’t even recognized by UnitedHealth Care and therefore can’t submit her billing.

These people have been working a month without pay. I can’t express enough gratitude for these wonderful people. Agency Aide’s would have left me in a puddle of my own waste weeks ago. I am about to lose one of my Independent Providers though if UHC doesn’t get it together this week. That will put my life and safety at risk.

I should also mention that UHC called me multiple times to express that they don’t like my social media ranting about how they are complicating my life and putting me at risk for losing care that is critical to my survival. I am not easily intimidated so I’m not sure if they were feebly attempting to intimidate me.

My Case Manager at UHC has offered to just send me a UHC Home Health Aide if mine stop coming to work. Lovely. I have a rather serious form of Osteogenesis Imperfecta. If a stranger tried to ‘help’ me, he/she will likely break my bones and possibly kill me. Excellent solution there UHC!

STOP ABUSING PEOPLE WITH DISABILITIES!

PAY OUR CAREGIVERS, UHC!

Ohio Rights Group Welcomes Mimi Peleg

click here for details

Stuck In The System

Recently, I had to learn a harsh reality by making a bad decision.  In my defense, I did extensive research and truly believed I was making a wise decision.  This is my story...

I receive SSI because I was born with a significant disability.  I receive Food Stamps (EBT) because SSI is not enough to cover all living expenses.  I receive Home Care services because I can't get myself out of bed or to the bathroom.  I also have a wall full of professional credentials and a desire to provide for myself as much as possible instead of being a drain on the system because I have a great deal to contribute.  

Toward the tail end of 2012 I read about Ohio's Medicaid Buy-In Program.  It seemed too good to be true so I made a few phone calls to confirm that I was understanding the program correctly.  All parties agreed that by enrolling in the Medicaid Buy-In Program I could start my own business, earn money, and not lose any of the critical services that I depend on.  However, when I reach a certain income level, I will lose the Food Stamps and SSI and eventually have to make payments to continue Home Care services.  I thought that sounded great since my goal is to get off the system.  "Sign me up" I said!

My home-based business started out slow yet steady.  Like any new business, any money made the first year or so isn't really profit.  It just gets reinvested into the business.  All seemed to be going in a prosperous direction.  

Then I received two letters in the mail.  The first letter was from Medicaid, informing me that they were reducing my Food Stamps.  For every dollar paid to me from my Customers, Medicaid will take a dollar from my Food Stamps.  "Yikes," I thought.  I didn't panic until I opened the second letter though, which was from SSI.  For every dollar paid to me from my Customers, SSI will take a dollar from my SSI payments.  I thought this must be a mistake because it did not make sense to me that SSI/Medicaid would take away from me twice as much as I actually earned.  So, I called the Social Security hotline to clear up this misunderstanding.  

Now, if you personally know me or you are a follower of any of my blogs, then you know I'm pretty thick skinned.  It takes a lot to really traumatize me.  Well, after being on hold for more than ten minutes, I was finally connected to a Social Security representative.  While she was "pulling up my file" I started to state my case and explain that either I am not correctly understanding the wording of the letters sent to me or there was a mistake made on Social Security's end because the situation at hand just did not make sense.  I honestly don't know if this woman heard anything I said.  As soon as she retrieved my file, she started screaming at me.  I am not saying she used a stern tone.  I am saying that my friend who was in a different room in my house came running to see what was going on because he could hear her screaming at me.  She was not on speaker-phone either.  The message I got from her abusive behavior is that there was no misunderstanding on anyone's part.  This is how it is and I can take it or leave it.  

It took me hours to recover enough to react.  I felt victimized.  She treated me like I was stealing from her.  My next step was no more productive than the previous though.  I called my Medicaid case-worker, only to find that she had been transferred and the new case-worker had no idea what I was talking about when I mentioned the Medicaid Buy-In Program.

I think the Medicaid Buy-In Program is a great theory but is very, very poorly implemented.  Until the powers that be figure out how to make this program work, it is not practical for me to pursue employment.  

Episode 19 of "HASH IT OUT WITH JANE" on KUSF-IN-EXILE - featuring Mary Verdi Fletcher

Putting this episode of "HASH IT OUT WITH JANE" on KUSF-IN-EXILE together was an exceptionally fun experience!  I went to downtown Cleveland, Ohio to interview the founder the Dancing Wheels Dance Company & School...Mary Verdi Fletcher!

Mary Verdi Fletcher & Jane Hash
Photo By: Tom Trainer 
Mural By: City Year Cleveland

The Dancing Wheels Dance Company & School is the first integrated Dance Company that includes wheelchair-user Dancers and non-wheelchair user Dancers aka Sit Down and Stand Up Dancers.  All the Dancers were very hospitable and let me watch them rehearse!  It was amazing!  I can't wait for their next show which is on May 19th at the Allen Theatre in Cleveland, Ohio.  This is a performance that you don't want to miss!  

Music Playlist

• T.REX - Cosmic Dancer
• Thievery Corporation - Dance on Vasline
• Stereo Nation - Akh Dab Ke

Dancing Wheels Dancers
Photo By: Tom Trainer

Click here to listen to episode 19 of "HASH IT OUT WITH JANE" on KUSF-IN-EXILE

Episode 16 of “HASH IT OUT WITH JANE” on KUSF-IN-EXILE

IMPORTANT UPDATE!  OUR CAMPAIGNING WORKED!  I'll be mobile again in a month to 6 weeks!

Disclaimer: I misspoke in this episode.  I said unemployment was at a record low but meant to say record high.  I apologize. 


This episode focused on the current email campaign aimed at Medicare and the Health Transformation Office to use your tax dollars sensibly by providing me with an appropriate American made power wheelchair instead of using your tax dollars to buy me a foreign wheelchair that I can't use in my house.  Medicare is not Ohio's money...it is EVERYONE'S money who pays taxes in the United States.


The reason one of our focus points is on the Health Transformation Office in Ohio is because their goal is to "streamline" Medicaid and Medicare.  This office is comprised of individuals from the state and federal levels of our government.


Direct your mail and emails to the following people:

Senator Rob Portman                                              Senator Sherrod Brown

37 West Broad Street                                              1301 East Ninth Street

Suite 300                                                                            Suite 1710

Columbus, OH 43215                                              Cleveland, OH 44114-1817

(800) 205-6446                                                             (888) 896-6446

Greg Moody, DirectorGovernor’s Office of Health Transformation
Greg.moody@governor.ohio.gov

Eric Poklar, Director of Communications and Government Affairs
Eric.poklar@governor.ohio.gov

Monica Juenger, Director of Stakeholder Relations
Monica.juenger@governor.ohio.gov


THE LETTER - COPY & PASTE


(edit words in BOLD)

Wednesday, March 7, 2012

Dear (insert name),

I am a tax-paying citizen of the United States.    I am also a tax-paying resident of Ohio.  This means that my money helps to fund Medicaid and Medicare, which both provide necessary healthcare for Americans who are low-income, disabled, and/or elderly.  Therefore, when I am aware of my money being spent irresponsibly and without forethought, it is my responsibility to speak up.

The specific situation I am writing to you about is regarding Jane Hash.   She is an exceptionally small statured adult woman with Osteogenesis Imperfecta who uses a power wheelchair for independent mobility.  She is a recipient of Medicaid and Medicare.  The Ohio Home Care Program, which is funded by Medicaid, spent thousands of dollars modifying her home last year so that she can carry out her Activities of Daily Living as independently as possible in her home.  This is an appropriate use of my tax dollars and prevents me from having to pay even more money for her to have institutionalized care, which in Ohio is currently running at a minimum cost of around $130 +/- per day of skilled nursing care.

A year ago Ms. Hash began the process of getting a new power wheelchair because her current wheelchair is old, in disrepair, and needs to be replaced.  Medicare has now rejected her request for an appropriate power wheelchair twice.  She is requesting a wheelchair that has comparable dimensions and features as her current wheelchair because that is what will work within her home (as modified by The Ohio Home Care Program precisely to fit her previously approved chair) to maintain maximum independence and it is what she is most comfortable in.

Medicare’s reason for rejecting her request for a new power wheelchair is because of the type of power wheelchair she is requesting.  Medicare recommends that she have a power wheelchair that is designed to facilitate a child who plays in wide-open spaces like a playground.  This power wheelchair would take away Ms. Hash’s independence because it is not an appropriate wheelchair for her environment that The Ohio Home Care Program helped her to create.  Purchasing a power wheelchair for her that she can’t use is not an appropriate use of my tax dollars and neither is unnecessarily remodeling her house every time she gets a new wheelchair.  This is not cost effective.

Furthermore, I have come to learn that, the inappropriate wheelchair that Medicare claims that Ms. Hash needs is manufactured by a company in Sweden and the wheelchair that she truly needs is manufactured in the United States.  I find this information unacceptable.  As a tax paying American I want my tax dollars to be spent in the United States.

On March 3, 2012 Ms. Hash’s power wheelchair stopped working.  She is now without independent mobility.  Please do what ever needs to be done in a speedy fashion to get Ms. Hash into an appropriate power wheelchair as soon as possible.

Respectfully,

(insert your name)

Music Playlist

• Star Spangled Banner
• Everythings Just Wonderful - Lily Allen
• Norman Greenbaum – SPIRIT IN THE SKY 
• Hope - Shaggy
• Afro Celt Sound System - Go On Through 

LISTEN HERE

Taken for a fucking joy ride - PART TWO

The day after the accident, where I was terrorized by a company who Medicaid pays to transport consumers like me, I was still in some pain.  My tolerance for pain is rather high so I'm not always certain if I have a fracture or not.  So, I decided to contact a lawyer and seek medical attention.


From here on, this lawyer shall be referenced as "B-WOP," that's short for  Blood-sucking WOP.  B-WOP assured me that even though my case is much smaller than the ones he is accustomed to dealing with, he would take it on.  No money upfront but he would take a third of any settlement.  "Settlement?"  I asked.  I was not after any money.  My goal was to get the transport company to fire their crappy driver.  B-WOP explained to me that if I didn't sue for damages (money), then there was no reason for him to get involved.  I took his advice.


Step one: Go to ER and get an exam & x-rays.  Easy.
Step two: Find an Orthopedic DR to order MRI/CAT scan and my read x-rays (my bones are hard to read).  Many doctors refuse to see me because I'm considered a liability due to my rare bone condition.  After 3 rejections, 1 doc agreed to see me and my x-rays because he was familiar with my bone condition.  Of course, his office was about 45 minutes away from where I lived but my options were nil.  We'll call him Dr.Shmeckel.  I went to see him and he said the x-rays I had were inconclusive BUT he could take better ones.  Ok.  I had them done right there and then at his office.  I then waited back in the exam room for the results (I still was unsure if my hip was fractured.)  After about 15 minutes Dr.Shmeckel came back into the exam room.  This motherfucker looked me right in the face and said "due to your pre-existing condition there is really nothing I can do for you...your x-rays sure are interesting though."  Dr.Shmeckel used ME to get some "interesting" show and tell material!!!  MEDICAID PAID FOR THIS!  Should he be allowed to charge the government for this?  He obviously had no intension on helping me.


Call me crazy but it looks like another case of Medicaid fraud.


Fortunately, I found an awesome orthopedic doctor.


The saga continues...