Kinnick Kay and Carver Lee: February 6th, 2009

Friday, February 6, 2009

February 6th, 2009 - Kinnick's new Gait Trainer

Kinnick's new Gait Trainer arrived today!

Kinnick was so excited about her new toy. She couldn't wait for us to put it together.

Ok, so on this picture, you're going to have to look past the messy hair, milk mess on the shirt and the leaky Mic-Key. We finished putting the walker together and stood Kinnick up to the walker. She grabbed the handles and took off. She walked all over the house. It was like she had been doing it forever. We were amazed that she would even touch the handles. She has such terrible tactile issues. It's the craziest thing. I don't think she'll need the gait trainer long, at all. The nice thing about Kinnick's gait trainer is that it came with a harness system that can be added. Carver can use the gait trainer with the harness. We aren't going to put Carver in it until we finish treadmill training. I want the PT to set it all up.

We didn't have quite enough money for the Stander we wanted for Carver. However, the funding committee met and agreed to let us use Kinnick's leftover money to pay the rest of Carver's bill for his Stander. The Stander should be getting ordered any day. He's still a little too short for the Stander we picked. He's only 30 inches tall now and the minimum height for the Stander is 32 inches. This is something that will be used for quite a while, so we wanted a nice comfortable one. We're hoping we can find a way to make it work.

5 comments:

Anonymous said...: Wow! That is amazing how Kinnick took off! She is adorable and looks like such a big girl! We don't care about milk messes :-) And I'm very impressed with all the therapy and treadmill things- it is awesome to see what there is to help them progress. You all are doing a great job! So glad to see the pictures and updates!
Neva; February 6, 2009 at 11:20 PM
Anonymous said...: totaly awesome! Way to go kinnick! Your twins look great! what miracles!; February 7, 2009 at 11:52 AM
The Buckley Family said...: Hello! I just started reading your blog thru someone else's and I have to say, your NICU course and so many experiences are so similar to ours and with our kids being only a few months apart and using some of the same therapies, it has been reassuring reading your blog! Annabel will be getting her gait trainer next week from our Early On PT and I can't wait! Anyway, just wanted to introduce myself and say congratulations - the twins are certainly miracles!

Jamie; February 7, 2009 at 8:27 PM
Garry & Anita said...: Hi, Marci told us how Kinnick took off on her new walker and we couldn't wait to look at the pictures on your blog. She just an amazing little girl, and she's so darn cute. Can't wait to see Carver take off on his walker some day too! Garry & Anita; February 8, 2009 at 11:50 AM
Anonymous said...: HOw did the appt with the developmental dr go? Just wondering.
Neva; February 11, 2009 at 9:51 AM

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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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