Hi Everyone,

Well, I’m running out of rabbits! Last night at approximately 8pm, a courier arrived at Corey’s room at Bryn Mawr to “serve” her denial letter from Blue Cross. I must tell you I felt betrayed and nauseous at how this was presented. I heard on Monday from our case manager at BM that BC, (and BM agreed), it was time to transition Corey home. Of course I asked based on what? There was no good answer except to say that sometimes patients with low level injuries “do better at home”. The truth came out in the letter from BC…based on the medical records provided it was determined that she has functionally plateaued. Bottom line, she is not showing the functional ability to be independent and it’s taking too long.

Acute care rehabilitation hospitals are set up for short term intensive rehabilitation. It is expected that a patient enter care, participate in an extensive therapy schedule for the patient to gain their strength and independent functions so they can transition home or to a sub acute facility. Once the patient moves to a sub acute facility, services/therapy are diminished because the normal standard is the patient is gaining independence, strength and functionality so they don’t need 7 days a week therapy they may only need 3 days a week therapy.

There are 1.7 million people that suffer from a traumatic brain injury each year. 10-15% of that 1.7 are low level patients; low level meaning the worst injuries. The balance of the 1.7 are moderate to higher level functioning patients. The standard practice of acute to sub acute/home transition works well for the moderate and higher level patients. The argument I continue to fight is that for the lower level patients, this is unacceptable. The best analogy I can think of is comparing an amputee to an athlete.

The 10-15% CAN NOT have a calendar or stop watch on their recovery. The first two years are crucial for Cognitive, Physical, Occupational and Speech therapy. A damaged brain does not heal like a broken bone. The brain controls the healing of the bones! It is the one organ that dictates our entire being. The Brain requires intensive therapy to reconnect the neurons that will allow the body to function. When Corey comes home her therapy hours will change from 18 hours per week to 4-5 hours per week. This is why we need to contact our Congressman and Senators immediately. Now is the time to change legislation not only for length of stay but for reimbursement to the hospitals.

You must also know that as the new Healthcare Plan is drafted today, the cuts to Medicaid will be for home care and rehabilitation. I was told by my Medicaid case manager that the State has asked her to inform all families with loved ones under 21 to open a savings account now because by the time Corey is 21, if she still requires home services there will be no funding for skilled nursing or therapy. It will be out of pocket because the State will be out of federal funding! All our fundraising is dedicated to therapy and skilled care for this very reason.

The process of dealing with Corey’s inpatient care, insurance coverage, Medicaid maze, billing issues, searching for skilled care in our area and let’s not forget working full time has been exhausting. Everyday I am fighting or dealing with someone telling me NO.

Truthfully, each night that I want to give up, roll over and stop fighting the first thing I think of is Corey. Can I look at her and know I am doing everything within my ability to get her what she needs to recover her new life? The second thought is for every family member in Bryn Mawr and across the country. The pain we share of seeing our loved ones in this “New Normal” state is often unbearable. We are mourning the loss of the person they were and trying to accept the person they are. We are mourning the loss of the life they had and the life we wanted for them. Then we have to fight for the care we know they need and deserve. This process is harder than walking into that triage room that first night! Families should not have to work so hard to fight for coverage, equipment, therapy and the support they need to survive this new life we share with our loved ones. We are healing from their injuries as well.

Now is the time to come together. We are bringing to light the standards set to measure length of stay at an acute care level for TBI patients are unrealistic regardless of the insurance carrier. The standards not only affect length of stay for the patients but reimbursement for most hospitals as well. The only way to make this change is to rewrite the standards and allow our professionals to do what they do best, care for the patient without most hospitals worrying if they will be paid or cut off! The timing is perfect with the implementation of healthcare reform and awareness of Congresswoman Gifford’s injury. As individuals we can be silenced, dismissed and ignored. Together we will be heard.

Monday morning at 9:30 am I will be appealing the denial in person. I will be stating our case, the reasons I disagree with the denial and requesting further extensions. At the very least, I will be asking for more time to interview home care agencies and therapy agencies. Blue Cross will provide the initial hours we need for home care however, on Thursday at 2pm I will be appealing the hours granted by Medicaid. Medicaid picks up payment after BC’s coverage is exhausted. I will be asking for an increase from 15 hours/day to at least 20-22 hours/day.

I’m not sure if there are any rabbits left. I often think how much fight do I have left…but just as I say to Corey, I can’t and won’t give up. If we are denied on Monday, Corey will be home on Tuesday. If that happens, we will start our new life with the love and support of this amazing community we live in. We are not alone. Corey will see her friends, have Amelia and Roxie to entertain her, JohnPaul and Caitlin coming home to visit and torment her and together we will continue to advocate for everything she needs to continue her amazing progress. Please continue to pray for us especially in the next week. Time to rest now, xoxo