Kinnick Kay and Carver Lee: December 26th, 2007

Wednesday, December 26, 2007

December 26th, 2007

Update on eye surgery:

Both babies were approved for a medical transport by air for their additional ROP surgery. They are scheduled for surgery 1/9/07 at William Beaumont Hospital in Royal Oak, MI. I will fly with the babies. We will leave 1/8/07. Hopefully this trip will not be as long as the last. They have scheduled a second surgery for both babies on 1/11/07. As much as I hate to put the babies through more surgery, we really don't have much of a choice if we are going to save their vision. If left untreated, Kinnick will be blind in both eyes and Carver will be blind in at least one eye. Please pray that this is our last trip and that Dr. Trese's group is able to save their vision.

Since this process has been difficult to coordinate, I am going to post the process at the bottom of this page. The process is actually pretty simple - I just didn't know where to begin. Hopefully, this will help someone else if they ever need the same service. I am also going to post the name of the hotel that I stay at while the babies are having eye surgery. The Director of Sales has been very kind to me. I have been able to stay at a Candlewood Suites in Troy, MI at $40.00 a night. This hotel has everything that you could possibly need: A pantry to purchase food, a gym, a laundry facility, fridge, microwave, cook top, dishwasher, and cookware. All of this in a very CLEAN hotel located near an awesome mall, Target, Walmart and anything else you could possibly need. The hospital recommended many others and none compared.

3 comments:

24weeker's Mama said...: ALOHA & Merry Christmas Shanon & family, we keep on praying for both babies and hopefully this eye's surgery will save their vision.

Baby Sam will have another eye exam in Jan.17. As you know that he has glaucoma and also doc will check his eyes again in Feb and decide if he needs more surgery or not. I hope not. Also he had hard time to gain weight, still under what his nutritionist expected. Now he is back to 24 cal instead of 22 cal.

I hope everything goes well. You will always in our prayers and thoughts.

Love,
Yani Shaffer; December 26, 2007 at 9:27 PM
Anonymous said...: We will definitely be praying for all of you and especially for the surgery! We hope you had a Merry Christmas and some day we still want to see the picture of the WHOLE family:-)
Love
Neva; December 27, 2007 at 11:38 AM
Stacy said...: Hey Shanon,
Well, we are sorry you have to come back here, but we are looking forward to seeing you guys. We just had our appointment with Dr. Drenser yesterday. We can't wait to be done with her...and we only have to drive 30 minutes, so I can only imagine how you feel.
Do you have our phone number? Call us when you get in town (I'll come up to the PICU to visit!).
Talk to you soon.
Love, Stacy; December 30, 2007 at 12:43 AM

Post a Comment

Disability Determination when you don't qualify Financially

In order to extend Cobra medical coverage 11 months due to a Disabled member of the family, a Disability Determination Award letter is required. How do you secure a Disability Determination if you are not intitled to an Award? You ask for a Special Determination (SSA-553) of Disability. How did we get this? Here are my contacts:

We live in Wichita, KS. My contact at the Social Security Administration in Wichita was Nick Janzen. His phone number is 866-931-4486.

The Kansas/Nebraska/Iowa/Missouri Regional SSA office is located in Kansas City. My contact in the Kansas City Office is Mike Stiles. His phone number is 816-936-5740. Mike is able to communicate with all of the Disability Experts including those at the national headquarters in Baltimore, MD. Mike was able to guide my Wichita, KS contact, Nick in order to complete the necessary paperwork to obtain a Disability Determination even though we didn't qualify under Title II or Title XV1.

Here's is how it worked:

Nick completed a paper SSA-3820 (for a child), and obtained as much medical evidence as possible from me. He also prepared an SSA-5002 with the date of my qualiffying event (date I went on Cobra initially). This material was then sent to the following Address:

Office of Medical and Vocational Expertise

P.O. Box 17786

Baltimore, MD 21235-7786

A Manual Development Worksheet (MDW) was used to document my case.

The OMVE will prepare and release the appropriate notice for this type of case and will return the completed case to the field office along with a special determination (SSA-553) of disability and a copy of the notice.

Overnight address:

SSA, Office of Medical and Vocational Expertise

1st Floor Oak Meadows Building

6401 Security Blvd

Baltimore, MD 21235

Sedgwick County Developmental Disability Organization - MRDD Waiver information

Kinnick and Carver are on the MRDD Waiver. This is a needs based program based on being mentally retarded or developmentally delayed - not income. So, regardless of income, you may qualify. What benefit are we getting from the MRDD waiver? If you are on this program at age 5, you will receive a medicaid card. Prior to turning age 5 (while on the waiting list), you qualify for case management and family support funds. Case management is very helpful in helping you find funding sources if needed. The family support funds have provided all of K&C's expensive equipment needs. Due to budget cuts, the family support funds are not available this year, but could return at any time. You shouldn't wait to sign up for this program. There is a waiting list to receive the medicaid card at age 5. The waiting list is 2 years or longer. Therefore the sooner you get on the waiting list the better. You do not have to be 5 to be on the waiting list.

How do you apply for the MRDD Waiver program?

Rachel Ryan

Intake and Referral Coordinator (SCDDO)

615 N. Main

Wichita, KS 67203

(316)-660-7640

http://www.sedgwickcounty.org/cddo

Kansas Medicaid - Travel Expenses

I'm posting this to help others. It has been a struggle to get Medicaid to pay for our travel expenses. I have been able to get them to commit to paying $81.00/day hotel expense, $27.00/day for food, and .20/mile for mileage to/from.

The KEY is to call the number(s) below before you leave on the trip (unless it is an emergency).

1-800-285-4978 Option 2 (Out of State Prior Auth)
The doctor from the referring hospital/office and the doctor that you will be seeing will need to send paperwork for your approval. You can call this number to confirm this is getting done.

1-888-561-8747 x5002 (Meals and Lodging)
Let them know where you are going and how long you think you will be there. You will have to call every 2 wks to extend the time. They only approve 2 wks at a time.

1-888-240-6497 (Transportation)
Let them know where you are going and how long you think you will be there. You will have to call every 2 wks to extend the time. They only approve 2 wks at a time.

Medical Transportation Approval Process

In order to obtain approval for Medical Transport, the following steps were followed:

1.) Kinnick and Carver's primary physician (Pediatrician) wrote a "Letter of Medical Necessity". Below is a small sampling of the letter:

LETTER OF MEDICAL NECESSITY

Date:
Insurance Company:
RE: Kinnick and Carver
DOB:
Diagnosis: ROP, 23 wk gestation twins, severe chronic lung disease.

Attention Medical Director:

The letter requested approval for an air ambulance round trip flight for the specific eye surgery. It then listed medical reasons why Kinnick and Carver's medical needs meet criteria for air ambulance transport for their eye surgery. Their medical needs consisted of the following:

Continuous oxygen per nasal cannula
Continuous cardiac and respiratory monitoring
Feeding intolerance that requires gastrostomy feeds
Deep suctioning using a suction machine and catheter

Signed by the Primary Physician

2.) My Primary Physician faxed the Letter to Kinnick and Carver's Case Manager at my Insurance Company.

3.) Kinnick and Carver's Case Manager forwarded the Letter to the Medical Director for approval. This process only took a couple of days.

4.) Kinnick and Carver's Case Manager faxed the Approval to Air Ambulance and my Primary Physician.

Kinnick Kay and Carver Lee

Our Journey

Email me:

Links

Blog Archive

Resources

Blogs I like to follow