It was a brand new day. We picked up our big girl pants and focused on moving forward towards the next hurdles.
We have been informed that the agency that provides Corey’s PT/OT/ST home based therapies is planning to discharge her as of April 13th recommending her to outpatient therapies with another agency and/or rehab.
I’m sure you are wondering how this is happening with all the progress Corey is making. Blue Cross found this agency for us. The critical mistake that BC made was telling this agency in June that it was a short term assignment and Corey would be going to school in September. School was then expected to pick up the services from that point on. Who ever misinformed this agency was scrambling to find ANY agency so they wouldn’t look bad on national television (they miraculously found this agency just as Fox National News aired Corey’s story).
9 months later, the Medicare based agency that does not typically see non-Medicare patients for long term care is ready to discharge her. When I pressed them as to why they are insisting she be discharged when she’s obviously making progress and yet not physically ready, they told me it’s because they are losing money each time they come out to provide Corey’s therapy.
First of all, Corey does not have the stamina to withstand outpatient services at this time. It is our goal to get to outpatient but she’s not there yet. Secondly, Blue Cross found this agency back in June because there is no other agency that will service our area with the therapists necessary for her rehabilitation needs (TBI rehab is not the same as “ordinary” rehab therapy). Third, there is no facility that houses all therapies with TBI experience within 1 hour of our home, so we will have to try to find 2 or 3 facilities that will service her. This is not feasible for one major reason…Corey can not physically handle the round trip commute or exercise session. She currently is getting 3 services a day in our home utilizing the agency and her school therapy team. If we take her to outpatient, her fatigue level will only allow her to handle 1 session maybe two per day. Unfortunately, none of these reasons truly matter to the Administrators making their decisions because it’s once again all about making money NOT progress.
It was a very busy day as I was strategically planning our next battles. I went to a local advocacy company to become better educated on the licensing and coverage of Medicare patients vs. Medicaid/Insurance patients. I’ve made an appointment with the Director of the Cerabal Palsy Foundation to better educate me on the State funding, waivers and grants available for TBI patients. Finally, I’m thrilled to share that as a result of meeting Senator Dominic Pileggi at the rally, his office called to set a meeting to discuss my concerns to change legislation for insurance coverage for acute care length of stay and the acute level of rehabilitation coverage for all TBI patients. We will be meeting in Harrisburg with two of his staff lawyers on April 9th.
Something needs to be done but it has to be appealed in the proper manner. We can not react emotionally. We must respond with facts, statistics and a sound presentation to support our argument for continued home services vs. outpatient services.
Corey has been struggling with fatigue. Her progress is the direct result of increased intensity of each therapy session throughout her day; this is natural and normal. This is also why we schedule her services with a few hours between services so she can rest/nap. There are days that her fatigue from an intense session still wipes her out for the afternoon sessions but the team adjusts to Corey’s in home schedule.
Today was no exception. Corey had two naps before Jen arrived for her afternoon PT session. After the girls warmed up on the exercise matte, Corey clearly stated to Jen that she ‘didn’t need to learn to walk, she can walk’. Jen assured Corey that she would one day but in the meantime, she would help her. I was working on a project in the basement during this time. Jen placed the immobilizer on Corey’s left knee and tied the ACE bandage around her foot tying it to her calf raising her toe up so the foot drop wouldn’t inhibit their walking.
Corey was holding onto the walker, Jen standing directly behind Corey supporting her hips. As they worked their way down the center hall from the living room to the kitchen, I heard a loud scream come from Jen and our nurse. I ran upstairs to find all smiles…Corey lifted her LEFT leg to step through for an independent step forward. She then transferred her weight onto the left, took a step with the right foot, transferred her weight to her right leg and pushed through moving her left foot forward for another step. She took 7 independent steps with her left foot/leg today!
Corey had 7 months of intense rehabilitation in the acute care facility of Bryn Mawr. (We began our weekly fight to stay in the acute care facility after 2 months). Once we were discharged we fought for the same hours of services for in-home care to continue what we knew would lead to steady recovery. Today’s step, 9 months later, is the culmination of her progress that only the acute level of in-home rehabilitation can provide! Out-patient is coming, but for now the services provided in-home are enabling Corey to gain the strength, stamina and ability to progress towards her independence outside our home.
CONGRATULATIONS Corey! We are so very proud of you! xoxo