Kinnick Kay and Carver Lee: April 4th, 2009 Kinnick is clapping!

Saturday, April 4, 2009

April 4th, 2009 Kinnick is clapping!

Ok, some good news and some bad news.

First the good news... Kinnick finally learned how to clap her hands. We've been trying to get her to clap her hands FOREVER. Today, we were reviewing, Where are your ears?, Where is you nose? (She just learned these over the past couple of weeks), and I threw in, Can you clap? She just clapped. I'm so excited, I keep asking her to clap and pat-a-cake. I'm so proud of her.

Now for the bad news.... One of Kinnick's contacts came out today. I can't get it back in her eye for the life of me. I have nobody here to help, so she's roaming the house with 1 contact. These contacts aren't like your normal contacts. They are really thick - especially in the middle. They don't stay on your finger. They roll around like a ball - I'm not kidding. So, you have to hold all of her limbs down, hold her head still, pry her eye open with one hand and put this forever moving object in her 1/2 opened eye. Oh, and it can't take more then 30 seconds or you have to stop and wet the lens. If you drop it (which I did many, many, times), you have to wash it. I kept dropping it in her hair. It takes more then 2 hands to do all of this. I'm hoping this gets better real soon. She can leave the contacts in for several days or a week, but they strongly discourage it because it can cause cornea issues that would prevent her from being able to wear contacts in the future. So, since it is a daily thing, maybe Kinnick will get used to it and just let us put them in without restraining her.

6 comments:

Melanie said...: Glad I stumbled across your blog. Your kids are darling.; April 5, 2009 at 7:34 PM
Beauty and the Beast said...: Tell her uncle bill will hold her down! :)lol. She'll get used to em.I can't imagine her liking the other options lol; April 6, 2009 at 8:16 AM
Anonymous said...: So glad to hear the contacts are in and working! Bummer about putting them in! I can't imagine trying to get a little one to sit still and be able to get them in! Glad to hear the progress both K&C are making!
Love
Neva; April 6, 2009 at 1:31 PM
Jennifer said...: How exciting that Kinnick clapped! What a great feeling it must have been to know she can do it. Love the new blog pic-Carter looks great!; April 7, 2009 at 6:34 PM
Unknown said...: Great job Kinnick! That is so exciting!; April 9, 2009 at 8:34 PM
Anonymous said...: I didn't realize kids so young could wear contacts!
Thats great if you can them to let you put them in.

Good Luck with that.; April 13, 2009 at 2:20 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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