Kinnick Kay and Carver Lee: April 9th, 2011

Saturday, April 9, 2011

April 9th, 2011

This past week has been really busy.

Carver completed his first week of pre-school outside the home in a school room setting.
Big brother, Hayden passed his Catholic School Kindergarten screening. So, we had lots of enrollment papers to complete.
Kinnick had an eye exam to get a new prescription for glasses. We tried the contacts and really liked them, but they just don't stay in her eyes. I'm not sure if it's because she doesn't understand what's going on, so she rubs them out. Or, if her eyes are just so miss-shaped from all of the surgery - making it impossible for the lenses to stay on her eyes. We're going to try glasses until she is a little older. Carver is starting to really use his vision. I'm still not sure if he's using any vision in his right eye, but he is definitely trying to use his left eye. So, we will most likely look into glasses for him. I worry about putting anything else on his poor head. I'm afraid he will injure himself. Anyone else have a child with spastic quad cp, a cochlear implant, and glasses? Is your child mobile? Carver only rolls. I'm guessing that they make flexible glasses - or at least I'm hoping.
Kinnick seen her pulmonologist. She's been sick since December. As soon as she gets well, she gets something else and is back on oxygen. She's finally oxygen free, but the doctor wanted her to take a steroid for a week, just to make sure.
Big brother, Gregory passed his driving test. This was just for his learners permit. He's currently taking driver's ed. We've put it off as long as we could. He's 17, so it's time to get it done.
Lastly, we're preparing for our trip back to Royal Oak, Michigan for EUA's for Kinnick and Carver. We leave first thing Monday morning. Nurse Marci will be going with us again. She always makes the trip much nicer. I'm looking forward to the trip. I love to see the people we met while Kinnick and Carver were in the NICU. I remember how horrible it was to be so far from home (16hrs) for 2 months. It was very lonely. I didn't want to leave the twins, so I refused to go home until they went home. The people I met made the stay so much better.

2 comments:

AJ's Mom said...: AJ has CIs & glasses. He has MiraFlex frames. They are extremely flexible, durable, and perfect for an active kiddo. They are made from a special plastic type material. Do a search online and you'll find the website. They are nice and lightweight-and have a stretch band across the back, so they stay on! Replacement bands are available too, incase it gets chewed or broken. Sometimes Aj falls asleep with his glasses around his neck and I'm able to just snap the band apart from the frame to remove them instead of pulling them over his face. They work really well with his CIs too. Check them out!; April 11, 2011 at 10:27 AM
Anonymous said...: Wow! You have been busy. Have a safe trip!
Love
Neva; April 13, 2011 at 8:18 PM

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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