Kinnick Kay and Carver Lee: June 13th. 2009

Saturday, June 13, 2009

June 13th. 2009

Kinnick slept better last night, but still had a hard time with her sats. For most of the night, she ran low 90's (91-94). Towards morning, she ran sats from 88-91. She's still on 1 1/2 lt of O2. The temp is definitely under control now. It hasn't been over 99.8. I'm trying to avoid giving any tylenol or motrin. However, she acts like she is so uncomfortable that I have been giving motrin once in the morning and once before bed. It seems to make her feel better. Her poor tummy is just a mess. I think this is where most of her discomfort is coming from. She's still having a hard time with her lungs. The right lung seems to always be worse. This morning has been pretty crappy for her. Her sats have been from 88-94. She's played a little, but just wants to be held. We're continuing to do the breathing treatments and hoping that things will be better in a couple more days.

I received a phone call from my Primary Insurance company the other day. We've always had a nurse case manager due to all of Kinnick and Carver's needs. It's been a big help especially with trips out of town. She's able to get all of our paperwork pushed through for us pretty quickly. Well, she told me that they were closing our case and need for nurse case management since Kinnick and Carver are so STABLE now. STABLE? What's that? We work hard on a daily basis to keep them well. Out of the blue they get sick - like Kinnick right now. I wouldn't call 1 1/2 lt of O2 stable. Carver has SEVERE sleep apnea - this isn't normal. I wouldn't call him STABLE either. Their eyes are also still a problem and Carver still needs another CI. I realize there are others worse off, but is it really that much to ask to be able to call a nurse case manager a couple of times a year for help?

2 comments:

Jennifer said...: Sorry that has happened. I wonder if it's due to all the cuts taking place everywhere? Our Ei program is having to take a mandatory 5% pay cut. That's for everyone across the board. They also put SLP on the chopping block but got that one saved at the last moment. Things are so tough everywhere and they are trying to find money in places where they shouldn't!

I do pray Kinnick gets back to better health very soon. It's so hard taking care of them when they are sick!; June 13, 2009 at 5:54 PM
Tiffany said...: That is crazy! I understand your pain. Randy's medicaid expires June 30th and I don't know what I am going to do about his weekly therapies.; June 13, 2009 at 8:21 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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