Comments on: Our Children Deserve a Voice in Healthcare Reform

By: Melanie

Melanie — Wed, 17 Jun 2009 23:32:56 +0000

Well spoken Dede. What a shame all the hoops you have to jump through! I deal with that with my daughter Skylar all the time. Always seem to fall through the cracks and then she suffers. I think the insurance companies go for whatever suits them best. For example Skylar is on a Fentanyl patch for pain. This is the generic form of the brand name. However Skylar was dropped by one of her insurance companies and now the other one taking over will only ‘pay’ for the brand name which cost $110.00 more a month then generic. Does that make sense? We called all over and couldn’t even find the brand because everyone prefers generic. We finally found it and our pharmacy no carries it for her but it is beyond me why did this and what’s in it for them? Then you deal with a thyroid med and they will only pay for the generic and not brand which is a much cheaper drug. I’ve shook my head so much over the last few years. Something needs to be done to regulate this and make it easier for us parents who deal with special needs children, isn’t that hard enough?

By: Darryl Hicks

Darryl Hicks — Thu, 11 Jun 2009 18:56:13 +0000

As the father of a 4 year old born at 33 weeks with a host of medical needs, “Downs” being the least of these, I hear Dede, loud and clear. There should be a forum calling for “exceptions” to the rules to be reviewed. If a case can be made for the prosthetic that includes why the patient’s wants and (better yet) needs, actually cost less, then to heck with the rules. Make new ones! Rules are there to ensure fairness & safety. “Not Just Because!” Insurance and state funds unavailable to our family to buy Pulse/Ox probes in the quantity needed, if provided, would cost less than that currently used for the tons of medical supplies we do get, but would be able to forgo. I know how our policy makers can make our coverage cost less. But will they listen?

By: Suzanne Klug

Suzanne Klug — Fri, 05 Jun 2009 10:04:58 +0000

Dede I’m a freind of your mothers. She has been my angel in life during a greif period. She kept me updated on Peter for a long time.

I’m so proud of you for your voice for the children who need help. They are our future and we need to do all we can to fight that fight for them. Keep speakin for the kids, your awesome.

Sue Klug

By: Jocelyn Guyer

Jocelyn Guyer — Fri, 05 Jun 2009 01:26:57 +0000

Thanks so much for sharing your story. The case you make for choice is deeply compelling and to my mind, who could argue, I mean really? You are doing the very best for your son and health coverage should support your efforts whenever possible, not throw up road blocks. Thanks again for sharing your experience.

By: Sharon Brockhaus

Sharon Brockhaus — Thu, 04 Jun 2009 13:13:17 +0000

I am Peter’s grandma and have supported my daughter Dede and her husband Darin as they have stuggled to be heard as paretns of a special needs child like Peter.
No parent should have to make choices on a doctor just because it is in the network when there is another doctor who specializes more in their childs needs.
I agree with my daughter that they have made the right choice with the prosthetic ear for Peter. It just does not make sense that the insurance will not cover the ear as she stated it is a medical issue to keep his glasses on.
I am so proud of my daughter and her husband for what a great job they have done with Peter. He is a truly a blessing to all of us.