Kinnick Kay and Carver Lee: Holy Crap! Kinnick knows her Colors!!

Tuesday, August 31, 2010

Holy Crap! Kinnick knows her Colors!!

Kinnick is legally Blind due to ROP (Retinopathy of Prematurity). She has no Iris, no lens and her retinas are mostly detached with fluid under the retinas. We were told by more then one doctor that Kinnick would not/could not see in Color. Well guess what???? They were wrong.

Listen to my little blind girl tell us the Color of all of her light box bowls.....

She got every Color right! I'm so proud of her. I'm about to split at the seams!

15 comments:

Only the Sheppards said...: Doctors: zilch, Kinnick: 5002. :)She's gonna prove them wrong every time! What an amazing girl!; August 31, 2010 at 8:20 PM
Sherri said...: I am SOOO happy for you and K! She is an amazing child and NO human on earth can say what she can or can't do!!!! Way to GO Kinnick!!! YOU ROCK GIRL :); August 31, 2010 at 8:32 PM
Unknown said...: that is fantastic! made my dae.; September 1, 2010 at 8:15 AM
Unknown said...: fantastic~! made my day to see this.; September 1, 2010 at 8:15 AM
Jacolyn said...: Awesome!!!!; September 1, 2010 at 8:45 AM
Emily said...: I love it when our kiddos prove everyone wrong! :); September 1, 2010 at 12:15 PM
Anonymous said...: YAY! I am SO excited for you and Kinnick! What a huge blessing. Just goes to show you can never count a kiddo out! I loved catching up on all your other posts about your trip too! Sounds like you are busy like always!
Love
Neva; September 1, 2010 at 3:08 PM
Sarah said...: Have you been working with her or did she just surprise you? Utterly amazing either way!; September 1, 2010 at 4:00 PM
Tiffany said...: You are going to make me cry today! That was beyond amazing.; September 1, 2010 at 4:48 PM
BusyLizzyMom said...: That is so amazing that she can recognize her colours. I can see how happy you would be.
I can't believe how grown up she is now.; September 1, 2010 at 8:54 PM
Jodi said...: Amazing! Way to go, Kinnick! Absolutely amazing!; September 1, 2010 at 10:10 PM
Erin said...: what a determined little girl (and mom!). so, impressive. and what a great teaching assistant, too. ;); September 1, 2010 at 10:57 PM
Kiera Rose said...: That is so great! She is so happy and proud of herself! What a sweetie! I love it!; September 2, 2010 at 11:55 PM
Tracy Hagen said...: YAY KINNICK!!! She just made my heart smile :) Miss you guys!
- Nurse Tracy; September 8, 2010 at 11:00 AM
The Hull Munchkins said...: wow! kinnick, you are amazing!! That was so neat.; September 11, 2010 at 12:44 PM

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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