Kinnick Kay and Carver Lee: April 2012

Thursday, April 5, 2012

Happy 5th Birthday Kinnick and Carver!

I can hardly believe that my little 1 lb babies are now 5 years old. Kinnick and Carver turned 5 on March 29th. We celebrated on Sunday, April 1st.

Since cake hasn't gone well the past 4 years, I thought I would get an Ice Cream cake this year. Kinnick and Carver have been eating Ice Cream and bananas as a snack for quite a while, now. So, I thought that they would surely eat their cake this year. Well, Kinnick was mad at something. She wouldn't even look at her cake and refused to sit by it. Carver tried a few bites, but it was so cold, he wasn't real interested. I suppose if I would have put it in the microwave for a few seconds and mashed some bananas in it, then maybe they would have eaten it. I still have a piece left, so maybe I'll give that a whirl.

Kinnick was excited to get her own Ipod touch. She LOVES music and drives everyone crazy begging to listen to Itunes on their Iphones.

New books are always a hit. We gave her a book about a dinosaur that cleans up his room. I'm hoping she takes a hint.

And of course, she got a new BLUE sweater. She wanted a blue sweater for school pictures, but we couldn't find one small enough for her.

Carver got some cool gifts. He got a soccer beeper ball. He's already learned how to turn it on.

Carver did a great job helping unwrap his gifts.

We got Carver an Incrediblock, so he can work on sitting. This will give him something to play with while he works on sitting. He seems to really enjoy it and the new bumblebee ball.

Carver is outgrowing his baby swing, so he got a new swing with a higher back to help support his head. I can't wait to hang it and take him out to swing.

And, one final picture of Kinnick giving her big brother, Hayden a hug. So precious!

Wednesday, April 4, 2012

Guess who started Pre-School on Monday!

Kinnick started Pre-School on Monday! Finally! She was so excited. She talked about it for 2 weeks.

Kinnick's O&M rode with Kinnick to school on Monday. She wanted to show Kinnick how to get to/from the bus with her mobility device. The goal is to help Kinnick be as independent as possible. She does amazingly well!

Getting a little nervous. Kinnick refused to have her picture taken.

Kinnick was so excited to get off the bus and tell everyone what a fabulous day she had at school. Kinnick has a Nurse that rides to/from school with her and another Nurse that stays with her in the classroom.

Once Kinnick gets off the bus, the Nurse gives Kinnick her mobility device and off she goes!

Kinnick is loving school and can't wait to go back the next day. She talks about all of her new friends and all of the fun things they do at school. She has a lot of "social skills" to learn. She doesn't see, so she tries to see with her hands. Not everybody likes to be touched. She has to learn to follow directions, and do things with the other kids. Sitting in circle time means sitting in a circle. Kinnick just sits in front of her new friends. It will just take time to learn how things are done. Vision plays such a big role in learning every day.

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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