Kinnick Kay and Carver Lee: January 24th, 2008

Friday, January 25, 2008

January 24th, 2008

Kinnick was release to come home last night around 9:30pm. She has bad diareah, but she is still on 1/2 lt oxygen satting in the 90%'s. We're happy to have her home.

What's next?

Kinnick and Carver will get their Synagis shots today to avoid RSV. My home heath nurse called in sick today, so hopefully they will be able to send someone to give the shot today. Today is the 30th day. You are supposed to get the shot within 28-30 days of the last shot. My home health care agency failed to send last months paperwork in, so I didn't receive the shots in advance. I called to have the shots sent overnight so that I would have them today. I'm still waiting on them. Drives me crazy having to double check people's work. I have so many appts for the babies, feeds, and meds. Then, there all all of the extras - like the trip to Michigan. There is so much to keep track of that it would be nice if I could rely on the health care agency and my Kid Screen case worker to do their job without me having to call and ask if something is getting done.

I still need to schedule an appt for Kinnick's BAER evaluation for her hearing. She hasn't been well long enough to get this done.

I need to get with Carver's ENT to find out the game plan for his hearing.

I'm not sure who is supposed to help me with how I'm supposed to communicate with a blind and or deaf child. So, I need to work on this.

Kinnick and Carver will lose their Medicaid cards 3/29/08. I'm working to keep Kinnick's card. She may qualify for another year due to having a G-tube, Oxygen, and suctioning. Carver will most likely lose his unless I can find someone to help me keep his. I thought with his disabilities, he would qualify. However, it seems like even though he has a disability or multiple disabilities, the state still uses the families income to determine eligibility. If anyone knows how I can keep his medical card, please let me know.

Thanks again for all of your prayers. Please pray for my patience - it's really wearing thin. I've been so frustrated with everything lately. I wear myself out trying to keep up with everything.

3 comments:

Anonymous said...: We will pray for patience. I completely understand that things can get frustrating and I'm not sure that others understand until they've had to be in a situation where they are an advocate for a loved one. I will keep my ears open to see if I can learn how to keep the medical card and I will also talk with our school hearing specialist to see if she has any ideas about communication. When we thought Charlie was going to have hearing problems, she was very good with us!! Do you mind if they email you directly?
Love,
Neva
Keep hanging in there!; January 25, 2008 at 2:38 PM
abby said...: Have you guys contacted Early Intervention (the birth to 3 program) yet? They should be able to set up an evaluation in the home pronto and get both of the kids services. I would get on them to do this ASAP. The earlier you intervene (both for vision and hearing issues but also for things like gross and fine motor skills), the better. Also, it gives you a trained eye who can hopefully help guide and reassure you, and also watch out for any problems that K and C seem to be having.

Speedy journey home!; January 25, 2008 at 5:09 PM
24weeker's Mama said...: Shanon thank u for the info about medicaid. I never knew it's only good for 1 year that means Sam's card will also expire soon.; January 25, 2008 at 11:09 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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