Kinnick Kay and Carver Lee: October 23rd, 2009

Friday, October 23, 2009

October 23rd, 2009

It's been a busy week. Next week will be another busy week. Carver gets his second ear activated on Monday. On Tuesday, Carver will have another sleep study. K&C have therapy sessions Wednesday and Thursday.

Yesterday, K&C seen their Dentist - she's the nicest lady. Neither of them have cavities, so they were allowed to join the "No Sugar Bugs Club" and got their names on the wall. Kinnick is missing 2 teeth (the 2 next to her eye teeth - 1 on each side). The Doctor said that the permanent teeth are also missing. My Mom was missing these 2 teeth, so was my older sister, and my older sister's first son. Stinks, because eventually she'll have to get 2 fake teeth to fill in the gaps. Right now, she has the funniest smile - gaps between every tooth. The Doctor said that it might not be real noticeable because she has such a small mouth. However, I remember how self conscious my sister was, so I want to get them fixed as soon as it makes sense to fix them.

I bought some PattiBobs for Kinnick's shoes. They are shoe inserts with really good support - better then the support they get from baby shoes. She seems to be more "stable" in a standing position, now. In fact, today she was letting loose of the wall, cabinets, and etc. and just taking off walking. She would just head in the direction of my voice. I'm so proud of her.

I'm excited to see how Carver responds to his new ear and the ability to localize sound. It's going to be a whole new world for him. I'm also excited to see if it makes a difference for him when it comes to balance. His balance is just so off. He's been trying really hard to sit from a laying down position, but just can't seem to figure it out. His tone is holding him back. Anytime he tries to sit up, I try to rush over and show him how to get to a sitting position. He gets a really big smile on his face once he is sitting. I know he still has a long way to go, but he's trying.

2 comments:

Mommy Darnell said...: I just found your blog, I have a 23 weeker too. Born 11/27/07. He is visually impaired but doing good. Just thought I would introduce myself.; October 24, 2009 at 4:14 AM
Melanie said...: I found your blog through another- I love reading about your darling kiddos. How exciting that he is getting activated. Can't wait to hear how it goes. :); October 24, 2009 at 6:49 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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