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Red Tape

This morning my support coordinator Stacy Stephens from TennCare, called to interview me and my sister Janna for the new PAE.  See, they score your needs on a chart in the PAE.  I read that if you don't get enough points, then you don't qualify for services, and if you score too many, they will require you to go to a nursing home.

I didn’t take my morning medication or shots so I could be vigilant during this interview.

I feel that Stacy continues to expect my ex-husband and daughter to provide care for me because I live in my daughter's home.  She doesn't seem to want to accept that David is disabled with Lyme Disease, and Alexandria is a pregnant single mother of a 3-year-old.  During the interview, she asked me questions about what I do when Janna is not here.  I answered honestly, but I do not see those questions on the copy of my previous PAE.  She asked me if I thought I was financially exploited and if she should call adult services.  That blew my mind!  I have never said that David or Alexandria hurt me.  They are family and have a life of their own!  I felt so defensive after she said that to me that I wanted to hang up, but a few minutes later, my phone actually died, so I got a moment to gain my composure.

In 2017, the first time I was interviewed for the choices program, the lady was super nice and understood Multiple Sclerosis and disabilities.  She understood the unpredictable situation that was my daily life. She encouraged me to talk about my good days and bad days.  She knew the help would make living at home possible and improve my quality of life.  She wasn't condescending, and she didn't twist my words or try to answer the questions she asked.

However, the interviews over the past few months have been so confusing.  I felt like I had no option but to say yes or no.  My life is never that simple, and my days are like a roller coaster!

During the court hearing, I took notes.  I now understand that even if I have good days that I should not count them in my usual daily needs.  If I need to care more than I don't need care, then I should answer the questions to reflect what I need.   Before the court hearing, I thought due to the unpredictable nature of Multiple Sclerosis that I didn’t have an option for good days, but the lawyer explained that I do base on the answer options of the PAE.

Today the interviewer often interjected questions into the interview instead of just asking the questions on the PAE.  I think that irritates me the most about this entire situation because the document is determining my care.  Isn’t it essential to focus on the form and not irrelevant questions?

In 2017, Shirley Pendley lectured about TennCare fraud and how to avoid getting in trouble.  I assume there are also rules about how to treat consumers in the program?  During the interview, I get the feeling that they do not feel I need help.  I feel like screaming...I am telling the truth, Call anyone I know, Call my doctors, Call the pharmacy!

When I am alone sitting in the quiet, I think about all the things that have been said to me, and I think I need a lawyer.  I feel it is cruel the way that they ask questions that are not on the form.  If we are, in fact going by the PAE, then why do these people need to change up questions and exaggerate what I say?  They seem to twist it to fit their narrative of my situation.

I have a right to stay at home and receive care from Choices.  I am more than qualified for the program.  There are days that I forget to shower, use the restroom, eat, or even drink water, but I am trying.  I get excited when I have a good day, but to take one good day and exploit it for the entire PAE is not only wrong but criminal.  It is taking advantage of the mental work I do to encourage myself on the bad days.  It makes me feel like unless every day is terrible that I won't be approved for care, and that is wrong!

It's is now 1:58 pm, and the interviewer has called back twice to ask questions for another form other than the PAE. She asked about my mental health at one point, then asked me if I still shaved.  Then she even asked me if I was over medicated because I get foggy after taking my pain medicine.  Then she tells me if I choose to pick my daughter Alexandria as my Representative, then my Consumer Directions will have to be placed on hold until my daughter is approved.  During that time, she said my care would have to be provided by an agency instead of my sister.  Do you see the insanity?  I left a voicemail with my support broker Jenna Williams at Public Partnership.

There are so many forms when getting help from the government.  I do wish they would explain them better and let you know what they mean.

It is 4:08 pm, and Jenna called me.  She is going to email Stacy and clarify that my consumer directions would not be put on hold if I simply make Alexandria my representative because I would still be the employer.  I also brought up the issues with clocking in and out compliance.  Before Jenna had told me that I am on Consumer Directions, so I have flexibility in my care, she said today we would get a landline if it continues to be an issue.  I feel like I am continually repeating this to Stacy, like she doesn't believe me.  Hopefully, the issue is settled now.  Maybe I can stop worrying about it every day.

This is a copy of the forms they send me occasionally to rate my services.  I do believe there is a break-in communication between Tenncare, Public Partnerships, and support brokers.



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