Kinnick Kay and Carver Lee: December 13th, 2008

Saturday, December 13, 2008

December 13th, 2008

Our new Rifton chairs have arrived. They are a little big, but we had to order to allow for growth. Kinnick sits pretty good in her chair.

Carver needs a little extra support to sit in his chair. The chairs are great for play, but not what we expected for feeding. The chairs are too short and too heavy to carry back-n-forth between the great room and kitchen. I'm going to try to order locking wheels to see if they will raise the chairs enough to allow a decent height for feeding and allow us to move them without hurting our backs.

Other good news... my PT is back from vacation and agrees that we should order the stander for Carver. She also agreed to order the gait trainer for Kinnick. So, hopefully we'll have something ordered in the next couple of weeks.

My new weekday nurse is doing great. She's experienced with developmentally delayed children. She's going to make a great addition to the team. I'm already seeing some improvements with Carver's standing. Between her and Marci, I think we're going to see some great improvements real soon. Her and Marci seem to have the same drive and determination. We are so fortunate to get 2 really great nurses. This will make going back to work part time so much easier. I haven't heard anything since my interviews last Wednesday. However, they needed to get some questions answered about part time. The job I interviewed for is a new role. They haven't had anyone in the role part time. Hopefully I'll hear something the first part of the week. I was planning to go back to work January 1st. The boss said that she was going to be very flexible with the hours. I would need to work at least 20 hrs a week and no more then 32 hrs a week. I can work 8-12 M-F. If I have a morning appt, I can work 1-5 or 11-2 or whatever I needed to work to get my 4 hrs. If I have to go to MI for eye surgery, I could work a couple of 8 hr days and take a couple of days off to go to MI. It all sounds too good to be true.

3 comments:

Anonymous said...: Wow! That does sound awesome! I really hope the job works out for you! I"m sure you could use a few hours out of the house. I enjoy my 4 hr job! It's just the right amount! Keep us posted. And I love the holiday picture :-)
Love
Neva; December 13, 2008 at 7:46 PM
Jodi said...: I'm so glad that your nurses are working out so well. That is just such a blessing. I think about you and your family often!; December 13, 2008 at 9:08 PM
Emily said...: We have a Rifton Toddler chair and LOVE it! We have all of the padding to go with it and the abduction block was an absolute must for us because of Dakota's tendency to slip down in chairs. Our chair looks slightly different then yours but is still the short style, maybe 12-16in off the floor. I honestly love it being short because it's the perfect height for someone to sit on the ground and feed her and for her to now climb into it on her own.; December 13, 2008 at 10:18 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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