Kinnick Kay and Carver Lee: Overdue update...

Wednesday, September 14, 2011

Overdue update...

Yippie!!!

Sonova Announces immediate market re-entry - FDA Approval for Advanced Bionics!

Here's the link.... http://www.sonova.com/en/investors/news/Pages/fdaapproval20110913.aspx

This means that Carver can finally get his right ear implanted again!!! We will likely have this done next month. We need to get through Kinnick's eye surgery first.

Kinnick is scheduled for Glaucoma surgery 9/22/2011. The pressure in her right eye continues to be high - in the lower 30's. They will be putting a valve in the eye to drain the excess fluid. Our doctor in Michigan only works on retina related issues. This is another specialty - yippie, we needed another one, right? Luckily, we found a very qualified Glaucoma doctor about 3 1/2 hours from our home. So, we won't have to take the long 16 hour trip for this surgery. This doctor is located in Kansas City. My best friend lives in Kansas City, so I'll get to see her while I'm there, too.

Carver got another round of Botox on Monday. It doesn't seem to make a huge difference, but every little bit helps. He recently had hip x-rays done and they didn't show any signs of trouble, so we're doing something right.

Carver is now attending pre-school 5 days a week. He seems to really enjoy going and likes all of his teachers. He's in a very small classroom - only 3 kiddos. There are more adults in the room then kids. This is giving him tons of attention.

Kinnick is still homebound. She continues to battle bad lungs. She spends about 50% of her time back on oxygen. It's crazy. Someone with a cold just has to walk by and she needs oxygen. Despite the fact that Kinnick is homebound for school, she is doing great and continues to learn. She's very interested in her A,B,C's and the sounds that each letter makes. She can say her A,B,C's and many of the sounds. She's counting to 10 in English and Spanish (little smarty pants). She's also doing a lot more pretend play. She's learning to walk around outside and listens for environment sounds to help tell her what's going on and where she is at in space.

2 comments:

Anonymous said...: Thanks for the update!! And I LOVE the counting in Spanish :-)
Neva; September 14, 2011 at 9:01 PM
Stacy said...: i got excited for a minute that you were coming up here (not that kinnick had to have another eye surgery...that stinks.). glad to read an update. miss hearing what's going on. hope you guys had a great summer.; September 15, 2011 at 11:48 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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