Kinnick Kay and Carver Lee: February 2011

Sunday, February 27, 2011

IEP's, IEP's, and more IEP's

Kinnick and Carver's IEP's are due again. The IEP's have to be reviewed once a year. This year, we're going to let Carver attend pre-school. He's done well without oxygen at night (except when sick), and when he does get sick, it doesn't seem to drop to his lungs. Kinnick will be staying home again this year unless things change. She continues to have problems with lung infections. Anytime she's around someone with a slight cold, it turns into pneumonia. We still haven't been able to take her off oxygen at night, either. So, I just don't view her as a candidate for school, yet. Carver will benefit from going to school. There is just so much more available to him at the school. I'm an equipment freak and do my best to get anything and everything possible to help both of the kids at home, but it just doesn't compare to what's available at school. For example, at home Carver is getting a total of 3 visits/MTH from the PT. Each visit is only 30 minutes. In the school, he will get 3 visits/WK from the PT. Each visit will be 15 min. In addition to the visits, Carver will be placed in positions during the day to help strengthen his core, neck control, standing, sitting, crawling, etc. This is a huge difference, and he really needs it.

I spent 4 hours in IEP meetings on Friday, and we're still not done. We'll meet again in a couple of weeks. We've worked through most of the goals for both Kinnick and Carver. We still need to work out Nursing in the school for Carver, a 1:1 for Carver (Intervenor type person) for the classroom, and busing. In order for Carver to take the bus to school (which is next door), he will require a 1:1 on the bus with him. Details, including responsibilities, need worked out for each of these things. The details need carefully thought through and worded in a way that benefits Carver and insures that he will have all of the support necessary to make school a success.

I was pretty pleased with all of the goals that the therapists came up with for the kids. They were on the same page as me, and made complete sense. I added a few small goals without any push-back from the therapists. I'm excited to see where we are this time next year.

I do have a question for my followers..... Have any of you had success holding your child back a year before going to Kindergarten? If Kinnick and Carver were born on their actual due date 7/16/2007, they would have been really young to start school - with a 8/1 birthday cut-off date. So, even though they were born 3/29/07, I still feel like they won't be ready at age 5.

I'll list all of our IEP goals in my next post.

Thursday, February 17, 2011

February 17th, 2011

This is hilarious! Carver knows a lot more then people give him credit for.....

Check this out. Carver knows how to turn his musical toy back on. I wondered how it was getting turned back on after I turned it off in the evenings.

Thursday, February 10, 2011

February 10th, 2011

Sorry that I haven't posted lately. Kinnick and Carver have both been very sick. The doctor wanted Kinnick admitted to the hospital. We managed to convince him that we could manage her just the same at home. We've been struggling since Friday to keep her oxygen saturation in the 90's. At times, I wasn't sure we were going to be able to do it. She's been on up to 2 lt of oxygen 24hr/day. We've been giving her tylenol/motrin around the clock for a fever. We finally got an antibiotic because it went to her lungs. She has pneumonia. Since she got the antibiotic and a super boost shot of Rocephin, she's doing much better. Hopefully, she'll be well by Monday. Carver has a terrible cough and sinus infection. He's been so miserable. All he wants to do is cry. I'm sure it hurts to cough. Neither are eating anything - Thank God for the G-tube, or they would both be in the hospital. Carver also got an antibiotic, so sleep may be in the near future for all of us. That would be nice :o)

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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