Hi Everyone,

Another busy day! Unfortunately, PT did not show up for the 2nd time this week, but that didn’t stop us from working towards our goal. Corey’s day nurse was diligent in ranging and moving her. I’ve mentioned Corey’s bowling game in earlier posts. Her nurse removed Corey’s leg braces and foot rests, set the pins at the bottom of the ramp and had Corey kicking the ball while upright in her wheelchair at the top of the ramp. She created her own PT session.

During transfers, we are now trying to hold Corey in the standing position for a few seconds before we swing her to the bed or the chair. Hopefully this momentary stand will help her gain some muscle for weight baring. Another exciting announcement that will allow us to work with Corey everyday…her new exercise matte will be arriving in the morning! We will put the matte in the living room as its 5’ x 7’ and won’t fit in the kitchen dinette area. I am very excited about this because now we can transfer her to the matte and properly range her and workout the way she did at Bryn Mawr. When PT does arrive for therapy, I have asked the nurses to film the sessions (I will be at work and unable to learn directly). The video will help us not only record Corey’s progress. We will learn the exercise routines so we can supplement the therapy on days we are not covered.

Speaking of coverage; Here are a few other examples of the daily struggles that pop up. Dr. Long wrote a letter requesting 1 hour per therapy 5 days per week for 8 weeks. Medicaid found the request medically unnecessary and approved PT for 2x/week for 6 weeks, OT 2x/week for 4 weeks and Speech 30 minutes 2x/week for 7 weeks. It’s a total of 5 hours a week for the first 4 weeks, then 3 hours for week 5 and 6 and then 1 hour a week for week 7…instead of the requested 15 hours for 8 weeks. Yes, I have appealed the decision. I am also appealing the denial for coverage of the quantity of Attends. Dr. Long requested 250 per month (an average of 8 changes per day)…Medicaid has denied the request because the standard approved is for 200 (an average of 6 changes per day). We now need a letter of medical necessity explaining why we need the extra 50 attends. Yes, I am appealing this decision. We requested more skilled nursing hours; 40 to be exact. The decision was rendered for an additional 14 which according to Medicaid will allow me time to work, sleep and tend to my household duties. Yes, I will be appealing this decision as well. FYI – each appeal is a separate case. This side of recovery is not known by anyone that is not going through it. This is the side that thousands of families deal with on a daily basis.

I’d like to share an article my sister sent to me today which confirms this difficult struggle for too many families. The examples sited above are just a few examples of why we need to repair the Healthcare issues! Some how, some way, we must get the attention of the people that do not have their child sleeping in a camping cot with a blow up mattress they call a hospital bed; or fight for the quantity of Attends their child needs for basic personal care! This is why we need to fight their idea of what is medically necessary especially when it comes to therapy so that our loved ones can reclaim their strength in order to function. It is my hope that sharing these details, I can educate and bring a voice to what thousands are screaming for yet their voices are exhausted or muffled.

Gabrielle Gifford’s and You: The Truth About Brain Injuries

Ruth Bettelheim, Ph.D. and Geralynn S. Knorr, MS CCC

Posted: 06/15/11 05:56 PM ET
The Huffington Post

Pretend for a moment that you are Gabriel Gifford’s, about whom we are at last being told the truth. After 6 months of inpatient treatment, the best that money can buy, you can’t speak fluently and must rely upon facial expressions and hand gestures to make up for words that vanish as you search for them. But continuing rehabilitation will not be available to you because your insurance won’t pay for it.

Imagine yourself the victim of a serious brain injury: losing the ability to bathe yourself, feed and dress yourself, walk, and even think clearly. Imagine that the career you love will be lost, and that the people you once took care of must become your caretakers, unless you can get further treatment.

No effort or force of will can prevent your personality, relationships, and career from being seriously and possibly irrevocably changed.

Those are often the consequences of even a “mild” brain injury. Every 19 seconds someone in the US sustains a traumatic brain injury, and 90,000 Americans are left with long term disabilities each year. These alarming numbers do not include military personnel, tens of thousands of whom also suffer a TBI annually.

Unlike Gabriel Gifford’s, their inpatient rehabilitation ends after 6-12 weeks, not 6 months. They will be discharged the moment they can transfer from bed to commode and use a walker, even if they are incoherent and cannot take care of themselves in the simplest ways.

Once at home, visits to a cognitive, speech or occupational therapist are limited by insurance policies to 12 to 15 hours total. Ready or not, you are then forced to rely on whatever resources you and your family can muster. No one will pay for the years of therapy that your recovery would require.

Gifford’s may someday be able to return to Congress, but she will need a great deal of assistance to track details of policies and news stories, read proposals, summarize meetings, and write speeches. These high-level skills will take years to fully integrate. Most brain injury patients do not have their job waiting for them, much less the medical care, support staff, and cognitive, speech and physical therapy to assist them with that job until they are up to the task themselves.

Gifford’s office has urged President Obama to require that insurance companies offer all brain injury patients the same continuity, quality, and duration of inpatient and outpatient rehabilitation services that are being provided to Gifford’s at taxpayer expense. Congress should mandate this coverage so that ordinary people with brain injuries, both veterans and civilians, have a chance to return to their careers.

It is a national tragedy for a gunman to shoot a US congresswoman in the brain, but it is a national disgrace that most brain injured civilians and military personnel in the US never receive the therapy necessary to recover any semblance of their former lives.