Corey had a busy day. She was well behaved with her feeding tube. Just to be safe I purchased an abdominal belt to wrap around her torso so she can not access the feeding tube. Let’s hope the Velcro holds tight!
Today was the last day for therapy from the Insurance Company. We have used our 30 therapy hours per calendar year. I also received a phone call from Keystone Mercy (our Medicaid provider). They do not have another Homecare Therapy company willing to work with them; therefore Corey will not receive any therapy until they find an agency. Medicaid doesn’t pay as well as Private Insurance.
Corey is 18. She has made significant improvements as a result of our supplementing the appalling decision to provide 3 hours a week therapy from Blue Cross/Medicaid. (I have another appeal for more therapy hours through Medicaid coming up next week).
Because Corey is still considered a senior in High School, our district initially evaluated her for an additional 3 hours a week (I am appealing for more hours). Corey was receiving 18 hours a week in Bryn Mawr. With both Insurance and the District, she was receiving 6 hours a week for the last two weeks. Now that Insurance has run out, we are down to whatever the district can provide until Medicaid can find a company to work with us.
Since we’ve been home (1 month) Corey has made progress in many areas however, she has regressed in others. Her left foot has greater “foot drop” as a result of not getting the intensive PT hours and our not having the proper therapy tools to assist the homecare therapists. Corey does not have the leg strength to tolerate weight baring exercises for extended periods due to the limitations of the nurses helping me to get her into a standing position. Corey has increased her drooling due to 30 minutes of Speech each week. She has lost some of her throat and tongue muscles that assist with managing her saliva and attempting to eat and swallow. These are just a few of the examples I could document. This is the very reason we began writing letters to our Senators and Congressman.
To reiterate the dilemma; the acute rehabilitation model is designed to be short term. It is focused on getting the patient stable. The insurance company assumes there is advancement towards independent living and the patient is then released to a sub acute facility or homecare where they do not need as many hours of therapy due to their increased progress.
We are trying to reach out to the Senators and Congressman to rewrite legislation granting longer rehabilitation stays for those patients that are stable clinically but still need the acute rehabilitation therapy hours. Once a patient leaves the acute facility, sub acute and homecare therapy hours range between 4-6 hours per week. If Corey wasn’t a student receiving 3 hours from our district she’d have no therapy from today forward.
The timing to expose this unacceptable reality is now as Healthcare Reform is still being negotiated. Thank you to those of you who wrote your Senators and Congressman. I have personally been in touch with Senator Pat Toomey, PA; Senator Bob Casey, PA; Congressman Joe Pitts, PA; Congressman Bill Pascrell, NJ; Senator Blumenthal, CT; and the office of Congresswoman Gabby Gifford, AZ. I have also been alerting the Media of Corey’s journey throughout the rehab stay and our transition home. Today I was contacted and informed that Fox National News will be running a story about Corey and the need to extend rehabilitation coverage. I have been working with Fox for several months and the producer of her story, “Brain Injury Injustice,” will air this Friday night on the Fox National News Channel. The producer will alert me of the exact time but we can expect it to be aired between 9pm and midnight Friday night.
Fox interviewed the Director/CEO of JFK rehabilitation center in NJ, Congressman Bill Pascrell (co-founder of the Brain Injury Task Force), Blue Cross (our insurance company), Dr. Yalamanchelli; Corey’s neurosurgeon as well as touring our home to document the renovations and film of Corey since she’s been home from Bryn Mawr.
The story Fox will highlight focuses on why extended inpatient acute rehabilitation is critical for the first 12 months of a patient’s recovery. In fact, it should actually be the first 18-24 months. Within that time frame, the patient often needs at least 6-8 weeks of normal healing of any fractures they sustained as they simultaneously are stimulated with Cognitive, Physical, Occupational and Speech therapy. The Therapy Clock should begin to tick when the patient is stable clinically. The standard now releases the patient when they become stable rather than allow them to begin the most productive time of their therapy cycle. This is not the chicken and the egg scenario. Each branch of therapy is crucial to help the patient emerge as they are cared for clinically.
Now is the time to rewrite “the rules”! As I shared with Fox, the insurance companies are in control. The Senate and Congress have no jurisdiction over them. It’s time the Insurance industry be exposed for treating their members as profit centers and hold them accountable to start treating them with the humanity they deserve. It’s time we remind them that we pay for our coverage. Who are they to tell us how they will spend our money?! It’s time the Senate and Congress carry our voices to the Healthcare Reform Committee. The Healthcare reform committee can “write the rule book”. We can be silenced individually by Insurance but Insurance can not ignore us collectively with the support of our Senate and Congress. Corey is not the only person that is denied coverage and fighting for her recovery, but we hope her story will represent thousands of others that may not be able to advocate for the rehabilitation they deserve to regain the life that they once dreamed of. It was once written; “A child will lead them”…let’s hope Corey is the Pied Piper!