Kinnick Kay and Carver Lee: Carver donates his "ears"...

Saturday, July 10, 2010

Carver donates his "ears"...

Carver started his hearing journey with Hearing Aids. We knew they wouldn't help him hear, but the medical world red tape makes you "try" hearing aids before you can be approved for Cochlear Implants. We have good insurance, therefore we got Oticon hearing aids at no cost out of pocket. This is a good brand of hearing aids and is designed to accommodate someone with profound hearing loss. Carver's hearing was beyond profound, he didn't even respond to 120db - this is equivalent to the sound of a Jet plane. Carver tried the hearing aids for 6 long wasted months. Then he received his first Cochlear Implant. Ten months later, he received his second Cochlear Implant. Once you receive a Cochlear Implant, there is no going back. There is no possible way to hear without a Cochlear Implant after you've been implanted. We were left with a very nice set of hearing aids. I put them away in a box as a "keepsake" - until I received an email from a mother looking for hearing aids for a darling 10 year old deaf girl named Galina from Belarus. This mother has been hosting Galina as part of the American Belarusian Relief Organization for the past 2 years, and is hosting her again this year. Galina's family isn't able to afford hearing aids. Galina is able to borrow hearing aids from her school during the school year, but is left with no hearing aids in the summer. So, we packed up Carver's hearing aids and shipped them to Galina. It feels good to be able to give someone the gift of hearing. I can't wait until Carver is able to understand what he has done for someone else. Galina was very excited to receive the gift. We truly hope she enjoys her new "ears".

Here's a picture of Galina....

5 comments:

Ellen Seidman said...: Hello! How absolutely wonderful that you were able to donate the hearing aid. I was sorry to hear about the rough start with Cochlear Implant, I had no idea that one could be contaminated—that seems beyond mind-boggling/awful. I hope the little guy heals quickly.

I will definitely be on the lookout for a Pony for you, and will post about it on my blog the next time I do a special-needs equipment giveaways, I can probably do it next week.; July 11, 2010 at 8:08 AM
Anonymous said...: What an an awesome thing! I'm so glad she is able to use them and what a joy!
Love
Neva; July 11, 2010 at 4:35 PM
Sherri said...: You guys are amazing! Carver will be very proud when he is older to know he has helped someone in need! Very cool!; July 12, 2010 at 9:59 AM
Tricia said...: We donated Emmi's after she was implanted. One of the girl's gymnastics coaches first lost one of his hearing aids, then broke the other. He had no health insurance, and could not afford to replace/repair his. We gave him Emmi's . They were completely useless to us, and it felt great to be able to help someone out.; July 14, 2010 at 7:08 PM
Kara Melissa said...: What a wonderful story!; August 4, 2010 at 10:58 AM

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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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