Kinnick Kay and Carver Lee: April 21st, 2008

Monday, April 21, 2008

April 21st, 2008

Tomorrow is the big day. We will board our Jet at noon and will arrive in Pontiac, MI at 3:30pm EST. The flight is only 2 1/2 hrs, so it's not too bad. The ambulance drive is about 30 minutes from Pontiac to the hospital in Royal Oak, MI. I'm taking a friend this time to help in case we are sent back to the hotel. This also works as a nice insurance policy. It never fails...if you go prepared for the worst case, the best case will happen. We're hoping to come back surgery free Wednesday or Thursday. Please pray that their eyes have stabilized and no surgery is necessary at this time. I know Carver will require add'l surgery at some point, but hoping we have a nice wait.

I wanted to show everyone the cute Hawaii shirts that my micro-preemie mom friend, Yani (Sam's mommy) sent Kinnick and Carver from Hawaii for their 1st birthday. Thank you Yani!
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Carver didn't want to have his picture taken. Each time, he either turned away or closed his eyes. Kinnick loves the pics, so no problem getting her picture.
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We had another busy week. My 18 year old daughter, Kirsten finally got her senior pictures taken. Every time we schedule, we have to cancel due to weather. Sunday was a little windy, but we managed to get some good ones.

We also made it through a senior prom.

Lastly, I met with my boss this past week and our HR department at Koch. Koch and the employees of Koch Supply and Trading have all been so good to my family. They have all gone above and beyond any expectation of a Job or co-worker. I can't even begin to tell you everything they have done for us. We've been meeting about every 6 months to discuss when I might be able to return to work. We'll, it's been over a year since the twins were born and I haven't been able to return due to all of the twins needs. Koch has been very patient, however I am still unable to say when I can return. The twins still have so many needs that require my time. It's a full time + job just keeping up with their needs day to day. So, I've decided to leave Koch after nearly 20 years. I'm leaving on good terms and am very sad. I just don't feel comfortable going back knowing how often I would need to take time off to take care of the twins needs. I like to think that I am a responsible and reliable employee. I wouldn't feel responsible or reliable going back right now. Once the babies are more stable (off equipment) and the appointments and surgeries are minimal, I will apply for another position at Koch. Thank you Koch and all of the employees of Koch Supply and Trading for all of your support over the past year! I love you all and wish you all the best! Please visit our blog and drop me a line anytime.

3 comments:

Anonymous said...: We'll be praying! I love those adorable shirts too! I'm so glad you get to take a friend with you this time. Keep us posted and we'll pray for good results!
Love
Neva; April 22, 2008 at 7:02 AM
24weeker's Mama said...: Aloha, I am glad the outfits fit them & i pray for no surgery in MI.
Sam is going to have a surgery to open his tear duct sometimes in May or June. Doctor said if after 12 months still get teary eye, she has to do the surgery.

Your daughter looks so pretty in that gown.

Hope to hear from you soon.

Love,
Yani; April 23, 2008 at 9:24 PM
Jodi said...: I hope everything is going well and that you are back home shortly!; April 25, 2008 at 5:09 PM

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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

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