Hi Everyone,

I received a call on friday from our case manager at Bryn Mawr. Natalie, PT; Anne, OT; Dr. Long and Dr. Freedman (the specialist that injected the botox) collaborated on a letter to send to the Medical Director at Keystone Mercy Medicaid. The letter will be sent tomorrow, Monday. It will not only outline Corey’s continued progress but her gains towards “functional improvement” as a result of the botox shots + consistant PT/OT sessions at the acute OP level. Once it’s faxed, we have to turn it over and hope it’s approved in time to resume services this Thursday.

If it’s denied, we will appeal but it may also be necessary to call on all of you for a letter writing campaign. I happened to think of this on the very day a friend of mine wrote to say she solicited several of her friends to write a letter on Corey’s behalf that could potentially be sent to assist our appeal.

Our primary insurance coverage for continued rehab has been exhausted. Corey’s medicaid coverage is now her primary provider. Medicaid is funded by an individuals state budget. It is run exactly like private insurance; they want to save money and use the same checklist to deny coverage. Just like private insurance, the person reviewing the submission for continued coverage often is not educated nor has an understanding of the particular request within the submission. They use a standard checklist of specific criteria. If the request does not meet and/or exceeds the criteria, the request for continued coverage is denied; there generally is no consideration for the individual and/or extenuating circumstances. This is typically where the appeal begins.

Most insurance companies, whether it be medicare, medicaid or private/independent companies, do not understand Traumatic or Acquired Brain injuries. They base their approvals on the length of recovery for the mild to moderate survivor. My analogy for this generalized score card would be to ask an amputee to run a race next to an olympic athelete and expecting the race to be close.

How will a letter writing campaign help? Look what we accomplished at Corey’s Corner!

I was recently asked to speak at a seminar about Family Advocacy. A TBI parent asked me why every one knows the pink ribbon (breast cancer) and no one knows about the green ribbon (TBI). I recalled the answer I heard at a national conference two years ago.

My reply, “If I had breast cancer, I could still go to work, yoga class, grocery shopping, out to dinner, a movie, a party, the beach and even take a weekend getaway or vacation. Most TBI survivors can not do these simple tasks. The families of the survivors that are more severe can no longer participate in these activities either because they are now caregivers. Many survivors and their family members lose their jobs and their ability to perform the very same tasks. Traumatic Brain Injury affects the entire family”.

“Breast cancer survivors can get out to rally and raise money for research and support. Many TBI survivors can not. Their families, if they own a disabled vehicle, can barely get to the grocery store let alone go for a 2 or 3 day walk to raise awareness. Traumatic Brain Injury is often called the silent epidemic. It was accurately coined because the families and survivors are constantly fighting for their basic needs and working hard to get through each day. At the end of that day there is no energy left let alone a breath to support their voice. Their screams are silenced by their isolation”.

Our Congressman and Senators are not at fault. They often are unaware of what LIFE is like for thousands of their constituents. They are unaware of the daily battles to appeal basic coverage for medical supplies nor the substandard quality of the supplies they are fighting for. They are unaware that length of stay and long term rehabilation is as critical as chemo is to the cancer patient. Without long term coverage, often lifetime coverage, the survivor will regress and end up costing the state more in food stamps, unemployement and welfare. If given the opportunity for longterm care, many survivors have the chance to improve, regaining function.

Severe to Moderate Brain Injuries require longer length of inpatient acute care, unlimited coverage for longterm out-patient rehabilitation; including homecare if the survivor can not physically go to an out-patient program.

Our appeal in not only for state legislators. Educating our federal Congressman and Senators is equally important as their funding approvals affect the individual states. Not all states have special waiver programs and/or equal medicaid/medicare coverage. In fact, Medicaid coverages are first on the list for budget cuts.

The CDC has posted an updated number. There is now 5.3 million annual Traumatic Brain Injuries reported nationally. How can this number have no voice? The families are isolated and fighting for their lives but the battle keeps them in the trenches as the rest of the world marches forward without them. We are not veterans but we are fighting a war just as important for OUR freedom! Freedom to recover in order to reclaim our lives.

Say your prayers for Corey’s approval and if you are interested, find your paper and pens, xoxo