Hi Everyone,
The pin was pulled from the grenade and today it exploded! We have been officially denied further coverage to stay at Bryn Mawr. I will be calling to start the appeal tomorrow. I will be meeting with our case manager to discuss details including what home care coverage we can receive as well as PT/OT/Speech therapies. I’m not entirely sure what all this will entail but I will keep you abreast of the process. This journey is a learning experience for all of us. I’m sure the information I find will help others at some point regardless of the injury or illness.
I have been working on an Injury-Recovery timeline in preparation for the appeal. I called Channel 10 and Channel 3 asking to help us expose what happens after the car is towed away. The USA Today medical writer did return my call; however, he can not help us at this time. He did lead me to investigate a lead, “the congressional brain injury task force”. They will be meeting me too! I have also contacted a patient advocate lawyer.
The letter to the Senator is complete. I will be posting it on a PART 2 to this page. Please consider forwarding it to your Senators (unfortunately, I did not have the time to research all their names). I wrote the letter from your perspective. We appreciate your support for Corey. I am hoping she will be the voice heard to make the changes for so many families across the country. Each traumatic brain injury patient deserves the opportunity for acute inpatient rehabilitation for the first year…not the first few months!
I’m not sure what the official discharge date will be, but we need to move full steam ahead on preparing the house. So far, the bathroom and interior ramp is covered by some wonderful anonymous donors. A co-worker is going to help with the ramp in the garage this coming Sunday. We need help with an outside deck and ramp (we hope will be partially donated by Lowe’s). Our fundraising efforts will purchase what is not donated.
As usual, this daily post needs to end on a high note. Well despite the explosion and the world spinning off its axis, we had a great night with Corey! I arrived at 5pm tonight. It was 70 degrees out! I kidnapped her for a long walk that led to the goose pond. JohnPaul and Caitlin surprised us and arrived at 6:30. The kids started telling stories, tormenting each other (and Corey – JohnPaul was throwing twigs at her) when we noticed Corey truly smile. That was all the kids needed to keep up the banter. Her smile expanded and she began to actually laugh! Although the laugh was silent, her body and shoulders were moving in a full blown belly laugh! At one point JohnPaul referenced something that was a private joke between him and Corey. She literally rolled her eyes at him.
What is most fascinating about this exchange is the stories were not just childhood “remember when’s”, they were stories from last summer and the time they spent together just before the accident. Not only did she completely understand them, but she was very present. More importantly, her laughter is evidence that she has some memory and it appears to be recent as well as long term.
Corey, laughing with the three of you again was so natural and brought me so much joy! You continue to amaze me. You hear everything we say and now you are showing us you understand. Honey, our journey doesn’t end at Bryn Mawr. I promise to fight for whatever time we can get to ensure you the best care possible. But whatever the outcome, we will continue to do everything, no matter what four walls surround us, to help you heal so you can make more memories to share and laugh about. And you will Corey, you will! Happy dreams, xoxo
Part 2 – Dear Senator
Dear Senator __________________
We are writing on behalf of Corey Beattie. Corey – age 18, was in a tragic car accident October 2nd. She spent 3 weeks in the ICU Trauma Unit.
She suffered a broken neck at C1, fractured clavicle, pelvis and femur with the worst injury being a Global Brain injury. She survived two brain surgeries, implant of a VP shunt to drain the cervical fluid and a femur repair.
Within the first 3 weeks, Corey’s eyes were open and she began to move reflexively. She was transferred to an acute inpatient Rehabilitation Hospital on the recommendation of the trauma team whose experience proved intensive inpatient rehab would offer Corey significant gains towards her recovery.
Since her arrival on October 22 she is now holding her head, sitting with assistance but gaining independent positioning, kicking her right leg, moving her left foot/toes, moving her arms and lifting her hips in a prone position. She has begun thumbs up/down, squeezing hands and hums for the initial forms of communication to command responses. She has begun showing signs of trying to formulate words as well as beginning to show emotion. Corey’s Neurosurgeon stated that he was surprised and impressed with her progress in just the last two months. She is showing more progress in 6 months than some of his patients with the same injury have shown in 2 years.
The issue we need to make public is that Corey’s Insurance is basing her length of stay on the FIM scale; Functional Improvement Measurement scale. A source of measurement that is unattainable for most levels of TBI survivors. In addition, her insurance plan with Blue Cross Personal Choice has NO CAP on acute care funding; however, because the Insurance Company is looking at a standard scale instead of Corey as an individual, her family is fighting for approval week to week. They want to deny further stay in a facility that is giving her the crucial stimulation that the first year of recovery requires! Their discharge is imminent!
Corey’s alternatives are grim. She has been denied by 20 nursing homes (65+) in her area because of her age and/or the facility not wanting to work with TBI patients. If she is approved for a nursing home, coverage is 120 days in a sub acute facility with the same FIM scale criteria and weekly approval measures. The insurance company maintains the power to decide sub acute care coverage as well. 120 days is not guaranteed.
The family’s alternative is to bring her home. Corey’s parents are divorced and they do not have family in the area for support. Neither parent can afford to become her full time caregiver. Insurance will not cover home care because Corey does not qualify based on their insurance’s medical necessity criteria. Her brain injury and dependence on skilled care doesn’t qualify as medically necessary as she only has a feeding tube.
Once Corey leaves the acute care setting, the coverage for therapy in a sub acute or for home care drops significantly from 3hrs/day 6 days a week to 2hrs/day 2-5 x per week based on her weekly evaluations.
Across the country, families and Medicaid are forced to supplement the patient’s needs. Medicaid funding is tenuous and doesn’t cover everything. The State waivers are limited and/or capped for additional services. Grants are only awarded to patients 21 and older.
Her local school district can supplement services however, their budgets are limited and that is an additional ongoing fight for the family!
Insurance companies consider cognitive development experimental. They do not understand that cognitive stimulation coupled with therapy will assist these individuals to gain the skills necessary to qualify the use of the FIM scale. In addition, inpatient rehabilitation will result in the development of skills necessary for the patient to regain their ability to be integrated back into their community. Intensive inpatient rehabilitation in the long run will save the insurance company money. The sooner the patient is integrated and independent the less insurance will pay long term. To judge patients and deny coverage prematurely is condemning them to regression in their long term recovery.
Gabby Gifford is privileged to receive unlimited funding, therapy and resources. For the thousands of regular citizens across the country that do not hold a Senate seat they are tossed into the “Treatment Gap” that Steve Sternberg of USA Today so eloquently explained in his March 22nd article. The patient’s families are forced to quit or lose their jobs and financially risk bankruptcy to provide the therapy their loved one deserves because Insurance won’t invest in them! THIS IS MORE TRAGIC THAN THE ACCIDENT!
Why should these individuals and their families be forced to accept the unacceptable? What a blessing for the Gifford’s not to see the other side of rehabilitation.
No parent or family member wants to receive “That” phone call, but the travesty of fighting for care truly represents the most devastating fracture suffered by the victims and their family. This is the real story of what happens after the car is towed away or the shot is fired!
We are reaching out to ask for your help. How do we make this public and fight towards getting minimum 1 year mandatory inpatient rehabilitation for ALL TBI patients? This is not just Corey’s issue; there are families across the country that are fighting just as hard for their loved ones. Perhaps Corey’s story will be the catalyst of change for everyone. It just takes one to make a difference!
Please help Corey and thousands of other victims across the county by creating a Bill to support Traumatic Brain Injury patient’s acute inpatient rehabilitation for the first year of recovery.
If you would like to contact Marie Beattie, Corey’s mother, please call her at 484-571-4778; or www.careforcorey.org
She will be able to give you the complete details of this young woman’s journey that is filled with nothing but obstacles.
Thank you for your consideration to this important issue.