The Unheard Voice

I have been taking my son to Lakeview Center for treatment of PDD, counseling, and medications for approximately three months.
My first experience with Lakeview was about two years ago.  My son woke up with a 104 degree temperature and I had to cancel his appointment that took me three months to get.  After numerous phone calls to reschedule and my calls not being returned, I quit trying.
When Christopher’s “issues” became more prominent and medications needed monitoring and critiquing, I had no other option but to take him to Lakeview.  The reason I was “stuck” with Lakeview is because there are no other options for children with Medicaid; either the doctor’s (physciatrist) don’t’ accept Medicaid or they have reached their “cap.”
At Christopher’s first actual appointment (remember he never got seen the first attempt), we sat and waited for over 30 minutes.  The same receptionist that checked us in asked me, “Well did you check in?”  When I answered yes, she said, “Was it me?”  I said, “Yes it was.”  They has lost his paperwork.  The doctor didn’t even know I was there.
There have been many medication changes.  Most of the medications out there have a side effect that cause aggression.  Christopher struggles with anger and aggression multiple times a day, every day.  When a dosage is too high, we go back down.
After taking one particular medication back down to a lower dose because the emotional melt downs multiplied at the higher doses, the doctor continued to write the scripts for the higher doses on two different occasions.  On one of those visits my husband took Christopher for me.  Thank God something told me to  ask if it was for the right dosage before he turned it in to the pharmacy!  We had to make TWO trips to Lakeview that week.  The second time I took him.  His doctor was not in so we saw the P.A.  The script was once again for a higher dosage.  When I corrected him, he said, “Well you will have to come back and get it tomorrow.  There are no doctor’s on staff today.”   I informed him this was the most unorganized place I have ever dealt with and if I had a choice, I would NEVER bring my child here.  I left angry and frustrated.  On the last visit, the doctor prescribed a new medication that would HOPEFULLY help him fall asleep.  She told me verbally how to give it to him.  When I dropped the prescription off to the pharmacy, they could not fill it because the doctor did not give proper instructions for the medication.  After the pharmacy called and faxed paperwork (and I called twice to let them know of the error) to Lakeview, it took 48 hours for my calls and the pharmacy’s calls to be returned. 
After filling my journal with rantings and ravings, the Lord brought it to mind that I have not once prayed about it or asked “what should I do.”  With each pen stroke my anger eased, my bitterness eased, and the desire to make a change grew.  After much prayer, I knew it was time to do something.
I emailed Congressman Jeff Miller, Governor Rick Scott, and Senator Marco Rubio.  Congressman Miller’s and Senator Rubio’s web sites were down at the time, so I found them on facebook.  I wrote all three the same letter:
“My son is on the autistic spectrum. He is also a Medicaid recipient. We have been dealing with Lakeview in Pensacola, FL for the last several months. On our first visit the receptionist that checked us in lost our paperwork. In the last few weeks the wrong prescriptions have been issued and most recently phone calls don’t get returned to pharmacy’s or patients regarding necessary medications.
Life can be challenging raising a child with so many disabilities; having to deal with an organization such as Lakeview only intensifies the situation.
There are little or NO doctor’s in Pensacola/Santa Rosa County’s that accept Medicaid. IF they do, they’ve reached their cap and will not take any others.
There HAS to be something we can do to make more options available for these precious, precious children!
I look forward to hearing from you WITH ANTICIPATION of what WE can do to make a difference!

Stacey L. Paden
850-292-3010″

Within 30 minutes of posting this on Jeff Miller’s facebook wall, I had a post from Mr. Miller telling me I would here from his office in the morning.  Before 9:00 a.m. that next morning I had a call from his office assistant.  She said Mr. Miller was touched by the email, and wanted to help in ways he could.  She gave me several names and phone numbers of people to call and steps to take to get answers.  She also explained that Medicaid is on a different level and there is nothing he personally can do, but he wanted to point me in the right direction!  HOW COOL IS THAT! 
One of the names I was given from Mr. Miller’s office was to Clay Ingram’s assistant.  She was able to give me more numbers and also encouraged me to contacted members of the Health Care Board.  She also gave me the number to the Agency for Health Care Administration (AHCA).
Before I even had a chance to call AHCA I received a phone call from the local chapter of AHCA!  Governor Rick Scott forwarded my letter to the director (who then forwarded it to the Director of Medicaid within AHCA in Pensacola!  We spoke on several occasions.  I told her I would do whatever it takes to get better care/treatment to the Panhandle of Florida for children on Medicaid.  She said she can not guide me politically, but she said I needed to file a grievance.  From there, they can intervene to some degree.  The rest is up to me. 
I sincerely ache over the state of Lakeview’s operation.  I can not imagine the pressure the doctor’s are under to see case after case.  No wonder there is so much confusion and un-organization. 
My goal here is to get funding to the panhandle of Florida for children (and adults) with autism, (especially those who are on Medicaid and funds are limited in the home).  For them to have doctor’s that can spend time with them, review their case ahead of time, know the patient that is coming in and not flush them in and out with the next wave.
Now, I know some of you, probably many of you reading this are cringing at the thought of more “money” going to “welfare.”  I am studying on how grants work, trying to educate myself as much as I can while on this pursuit.  I know there are people, MANY people who use the system and commit fraud daily receiving benefits they do not need.  The Government’s system for assistant outright stinks.  It is NOT made for one to succeed.  It is designed in such a way to keep you on welfare.  Sadly, a person can make more money on welfare than they can working a 9 to 5.  BUT, innocent children and some adults with serious psychiatric problems are suffering because they CAN NOT get adequate care.  So lets keep this in perspective.  Who knows, maybe once I win this battle to get these precious children taken care of, maybe I’ll fight the welfare system next! (I know, that’s funny, right!)
Please pray for me for wisdom, grace, INTEGRITY as I speak to various people and try making a change for the better for the unheard voices of autism.
Thanks for reading.  I welcome any advice you might have, and yes, even the ones who don’t agree with me can leave a comment.  I will post it as long as there is no profanity in it.

Stacey

One thought on “The Unheard Voice

  1. The best advice I was given when my children with special needs were born was be their best advocate. You are doing great things – keep it up!

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