Parents write to Mouth

Mouth Off

letters to Mouth from web wanderers

May 2000

updated May 16,2000

We got a lot of mail from parents following publication of our Special Ed issue. Here's one that qualifies as a call for help -- your help. Please help if you can. -- editor.

The state of Arizona's health care cost containment system is trying to kill my 7 year old disabled son, Bryce. He is in need of a kidney transplant. His dad wants to give him a kidney and the state's insurance contractor is saying my son is "worthless" and is blocking access to this life saving treatment. Bryce's pediatric nephrologist Robert Haws, MD, is asking for help from anyone to get this into the media. This company, Comprehensive AHCCCS Plan is responsible for providing health insurance to the disabled children in our district. Many children's lives are at stake.

Here is a newspaper editorial, used by permission, that explains it a bit better.

TODAY'S NEWS HERALD
by Becci Angell Todays New editor
Lake Havasu City Az

A Dangerous Path

If doctors were really the fortunetellers they make themselves out to be, Bryce Ian Decker would have died seven years ago, shortly after his birth. The physicians who helped bring him into the world looked at Bryce's malformed skull, twisted body and clubbed feet, and within days of his delivery, told parents Mark and Julie Decker to prepare for their infant son's imminent death.

Instead, this young miracle, described alternately as developmentally delayed, mentally retarded and severely handicapped, has clung to life through 30 surgeries, multiple hospitalizations and the fitting of prosthetic limbs. He now faces the prospect of a kidney transplant in June. Through it all, Bryce has managed to achieve milestones the doctors said he would never realize, learning to crawl, sit up and play, devising his own sign language, even attending a special school.

If there ever was a symbol of hope and inspiration, it has to be Bryce Ian Decker. In addition to surviving nature's repeated attempts to take his life, Bryce has endured despite what his mother calls a "death sentence" allegedly applied by the boy's own medical insurer. According to Bryce's doctor; the insurance plan last week refused to cover dialysis treatments that are necessary to keep the boy alive until he receives a new kidney from his dad this summer. Because dialysis has been a successful and accepted treatment for children since the 1960s, Bryce's doctor believes the only reason for the insurance company's denial is that "the child does not have a normal IQ."

A spokesman for the insurer, who refused to discuss Bryce's case specifically due to rules of confidentiality, said that, in general, "all aspects of a person's medical condition are taken into consideration when a medical review is performed." He went on to say that the state "mandates that all of its health plans make decisions to provide medical care based on medical necessity and cost effectiveness."

That kind of tough talk sounds great if you're a stockholder or a taxpayer or a bureaucrat, but not if you're the parent of a child some might think expendable. The reality is, however, that we all should be concerned when the almighty dollar hiding behind terms like "cost effectiveness" and "fiduciary responsibility" becomes an excuse to deny medical care. Because, if a vulnerable child like Bryce Ian Decker can be turned down, how long will it be before the insurance companies find a reason to deny your claim?

Age. You're just so darned old, we can't see putting any more money into you. Health habits. As a smoker, statistics prove you'll probably die of lung cancer or heart disease anyway, so why bother fixing any other medical problems?

Educational status. Since you never went beyond high school, your limited earning power makes you more of a societal liability than an asset.

Genetics. Your mama succumbed to breast cancer at age 38. History repeats itself, right? In the 1930s, as Adolf Hitler was coming to power and his message of anti-Semitism was spreading, many chose to ignore the horror because they weren't Jewish and couldn't see how it could affect them. But before long, most of Europe, the Poles, the Czechs, the French discovered that the "I'm not Jewish, so why should I worry?" attitude wouldn't save them from the juggernaut that had become the Third Reich.

If we allow it to, if we put our heads in the sand and say, "it doesn't affect me," the medical insurance industry threatens to become another juggernaut, rolling over the innocent, the poor, the uninformed. Miracle children like Bryce Ian Decker may be the first casualties in these early days of battle. But when the war escalates, many more will be injured.

Maybe even you.

---

Update from Julie Decker:

Since this article was published, the insurance company's decision was overridden and Bryce received the dialysis catheter. The insurance refused outpatient dialysis and held Bryce hostage in the hospital until they were once again forced to approve the service. They are now working hard to block Bryce's transplant. They are harassing doctors and blocking the Evaluation! This company is diabolical and is hurting so many children...Please Help!

Mark and Julie Decker
478 Cheyenne Lane
Lake Havasu City, 86403
520-453-3820

Robert Haws, MD
Phoenix Children's Hospital
Head of Pediatric Nephrology
909 E. Brill Street
Phoenix, Arizona 85006.

photo of mouse on a wheel

Mouth,

The Special Ed issue could not have come at a better time for me. I have a five-year old little boy, Kylen, who has cerebral palsy and mental retardation. I try to be the best advocate for him that I can be.

My district told me that the DASH (Dakota Alternative for the Severely Handicapped) program was for my son. They gave me no other options.

I made an option: I said, "I want him fully included into regular education with a one-to-one paraprofessional." He was fully included this pre-school year. He will be fully included into his COMMUNITY K class next fall. People ask why I would put him there. I have to explain and justify continuously. Sometimes I get weary in my efforts.

Mouth uplifted me, and gave me more strength to continue. I said to my mother, "Mom, the writers of this magazine ARE people with disabilities. They think I am doing the right thing." I used the statement that I heard before about the person with the disability trumping the parent of a person that has disabilities. I can't thank you enough for the encouragement I get every time I pick up my Mouth or my Ragged Edge. This Special Ed issue is FABULOUS!!!!!

Kathy enclosed a powerful letter to her local paper, The Sun-Current, about comments made by Bruce Rimstad, Business Manager for School District 199 where her son attends. Rimstead had said "Special Education is actually eroding the school district's ability to provide funding for its general education and siphoning dollars away from our other classrooms."

Here's an excerpt from Katy's reply:

I believe my son is worth the money. My son is worth the effort. My son deserves the highest quality education. Parents of children that do not have disabilities feel this way, so why would I feel differently?

Should I feel ashamed that the costs are higher to educate my son? Should I feel embarrassed in my own community? I will not be forced to feel apologetic for wanting the best education for my son.

I urge Mr. Rimstad as well as other public officials in this district to reconsider the blame game that has been played now for over a year with special needs students. What good is it for this community to view my son as a financial burden?

My desire is for Kylen's peers and this community at large to embrace my son and his differences. Instead of pitting parents of special needs students against parents of regular education students, why not go hand in hand to the capital and lobby for more financing for school districts? Let us say that all the children in this community are worth educating.

It is difficult for some people to see beyond my son's little red wheelchair. It will only be harder with a dollar sign attached to his forehead. My son is a child, a human being. He does not erode, and he does not siphon.

I want to thank Kylen's current and past special educators as well as his regular educators for believing in him, and giving him every opportunity to learn.

Kathy Ware.

Mouth,

Thanks so much for the magazines. The story came out great.

Tom Gilhool [attorney with PILCOP for the Bradley family, see issue #59] was still here when the magazines came in the mail. He was impressed. He wants to make certain we get the widest possible distribution.

He and our family really appreciate your efforts. You did a very good job on the whole issue.

Thank you for fighting for our kids.

The Bradley family
Tom, Diane and David

Senior photo of David Bradley.

drawing of some french fries

Mouth,

Brianna insisted I write to you about this retaliation. [Brianna was the subject of an article in Mouth #59, "The Great Wooster High French Fry Conspiracy."
Click here to read it.]

By Monday the school had likely gotten a copy of the MOUTH and they called Brianna into the "counselor's" office, forced her to strip off her coat, hold her arms out like she was being frisked, and they inspected her for bruises. (She has ataxic hypotonic cerebral palsy.) Then they asked her where she got a two-week-old bruise.

When she said "I fall, I have CP," they told her, "Well, we are going to have to turn this over to child protective services..."

How many sixteen- (seventeen next week) year-old students do you suppose they pull out of class for such "inspections?" Really, just an opportunity to humiliate her, put her in the "child" category and try to put her in her place!

But she's armed with a copy of the MOUTH (it goes with her everywhere), so if they do come calling, she is going to handle it herself, and show them the article!

Brianna and Deidre Hammon

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Mouth wants you to speak right up right here. Let the world know who you are and what's on your mind. Click here to send us an email.

We will print your email address at the bottom of your comments. If you would prefer, we will print your name, city and country instead. Just say so.

Some of these letters may appear in the print version of Mouth. We do edit both email and snailmail for length and clarity, but never for meaning. Your meaning is your own, even when we don't agree.

We think you'd be surprised how few people pick a fight with us. Come on everybody -- bring it on!
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	*Mouth Off*	`letters to Mouth from web wanderers` `May 2000` `updated May 16,2000`

	We got a lot of mail from parents following publication of our Special Ed issue. Here's one that qualifies as a call for help -- your help. Please help if you can. -- editor. The state of Arizona's health care cost containment system is trying to kill my 7 year old disabled son, Bryce. He is in need of a kidney transplant. His dad wants to give him a kidney and the state's insurance contractor is saying my son is "worthless" and is blocking access to this life saving treatment. Bryce's pediatric nephrologist Robert Haws, MD, is asking for help from anyone to get this into the media. This company, Comprehensive AHCCCS Plan is responsible for providing health insurance to the disabled children in our district. Many children's lives are at stake. Here is a newspaper editorial, used by permission, that explains it a bit better. TODAY'S NEWS HERALD by Becci Angell Todays New editor Lake Havasu City Az A Dangerous Path If doctors were really the fortunetellers they make themselves out to be, Bryce Ian Decker would have died seven years ago, shortly after his birth. The physicians who helped bring him into the world looked at Bryce's malformed skull, twisted body and clubbed feet, and within days of his delivery, told parents Mark and Julie Decker to prepare for their infant son's imminent death. Instead, this young miracle, described alternately as developmentally delayed, mentally retarded and severely handicapped, has clung to life through 30 surgeries, multiple hospitalizations and the fitting of prosthetic limbs. He now faces the prospect of a kidney transplant in June. Through it all, Bryce has managed to achieve milestones the doctors said he would never realize, learning to crawl, sit up and play, devising his own sign language, even attending a special school. If there ever was a symbol of hope and inspiration, it has to be Bryce Ian Decker. In addition to surviving nature's repeated attempts to take his life, Bryce has endured despite what his mother calls a "death sentence" allegedly applied by the boy's own medical insurer. According to Bryce's doctor; the insurance plan last week refused to cover dialysis treatments that are necessary to keep the boy alive until he receives a new kidney from his dad this summer. Because dialysis has been a successful and accepted treatment for children since the 1960s, Bryce's doctor believes the only reason for the insurance company's denial is that "the child does not have a normal IQ." A spokesman for the insurer, who refused to discuss Bryce's case specifically due to rules of confidentiality, said that, in general, "all aspects of a person's medical condition are taken into consideration when a medical review is performed." He went on to say that the state "mandates that all of its health plans make decisions to provide medical care based on medical necessity and cost effectiveness." That kind of tough talk sounds great if you're a stockholder or a taxpayer or a bureaucrat, but not if you're the parent of a child some might think expendable. The reality is, however, that we all should be concerned when the almighty dollar hiding behind terms like "cost effectiveness" and "fiduciary responsibility" becomes an excuse to deny medical care. Because, if a vulnerable child like Bryce Ian Decker can be turned down, how long will it be before the insurance companies find a reason to deny your claim? Age. You're just so darned old, we can't see putting any more money into you. Health habits. As a smoker, statistics prove you'll probably die of lung cancer or heart disease anyway, so why bother fixing any other medical problems? Educational status. Since you never went beyond high school, your limited earning power makes you more of a societal liability than an asset. Genetics. Your mama succumbed to breast cancer at age 38. History repeats itself, right? In the 1930s, as Adolf Hitler was coming to power and his message of anti-Semitism was spreading, many chose to ignore the horror because they weren't Jewish and couldn't see how it could affect them. But before long, most of Europe, the Poles, the Czechs, the French discovered that the "I'm not Jewish, so why should I worry?" attitude wouldn't save them from the juggernaut that had become the Third Reich. If we allow it to, if we put our heads in the sand and say, "it doesn't affect me," the medical insurance industry threatens to become another juggernaut, rolling over the innocent, the poor, the uninformed. Miracle children like Bryce Ian Decker may be the first casualties in these early days of battle. But when the war escalates, many more will be injured. Maybe even you. --- Update from Julie Decker: Since this article was published, the insurance company's decision was overridden and Bryce received the dialysis catheter. The insurance refused outpatient dialysis and held Bryce hostage in the hospital until they were once again forced to approve the service. They are now working hard to block Bryce's transplant. They are harassing doctors and blocking the Evaluation! This company is diabolical and is hurting so many children...Please Help! Mark and Julie Decker 478 Cheyenne Lane Lake Havasu City, 86403 520-453-3820 Robert Haws, MD Phoenix Children's Hospital Head of Pediatric Nephrology 909 E. Brill Street Phoenix, Arizona 85006.

		Mouth, The Special Ed issue could not have come at a better time for me. I have a five-year old little boy, Kylen, who has cerebral palsy and mental retardation. I try to be the best advocate for him that I can be. My district told me that the DASH (Dakota Alternative for the Severely Handicapped) program was for my son. They gave me no other options. I made an option: I said, "I want him fully included into regular education with a one-to-one paraprofessional." He was fully included this pre-school year. He will be fully included into his COMMUNITY K class next fall. People ask why I would put him there. I have to explain and justify continuously. Sometimes I get weary in my efforts. Mouth uplifted me, and gave me more strength to continue. I said to my mother, "Mom, the writers of this magazine ARE people with disabilities. They think I am doing the right thing." I used the statement that I heard before about the person with the disability trumping the parent of a person that has disabilities. I can't thank you enough for the encouragement I get every time I pick up my Mouth or my Ragged Edge. This Special Ed issue is FABULOUS!!!!! Kathy enclosed a powerful letter to her local paper, The Sun-Current, about comments made by Bruce Rimstad, Business Manager for School District 199 where her son attends. Rimstead had said "Special Education is actually eroding the school district's ability to provide funding for its general education and siphoning dollars away from our other classrooms." Here's an excerpt from Katy's reply: I believe my son is worth the money. My son is worth the effort. My son deserves the highest quality education. Parents of children that do not have disabilities feel this way, so why would I feel differently? Should I feel ashamed that the costs are higher to educate my son? Should I feel embarrassed in my own community? I will not be forced to feel apologetic for wanting the best education for my son. I urge Mr. Rimstad as well as other public officials in this district to reconsider the blame game that has been played now for over a year with special needs students. What good is it for this community to view my son as a financial burden? My desire is for Kylen's peers and this community at large to embrace my son and his differences. Instead of pitting parents of special needs students against parents of regular education students, why not go hand in hand to the capital and lobby for more financing for school districts? Let us say that all the children in this community are worth educating. It is difficult for some people to see beyond my son's little red wheelchair. It will only be harder with a dollar sign attached to his forehead. My son is a child, a human being. He does not erode, and he does not siphon. I want to thank Kylen's current and past special educators as well as his regular educators for believing in him, and giving him every opportunity to learn. Kathy Ware.

	Mouth, Thanks so much for the magazines. The story came out great. Tom Gilhool [attorney with PILCOP for the Bradley family, see issue #59] was still here when the magazines came in the mail. He was impressed. He wants to make certain we get the widest possible distribution. He and our family really appreciate your efforts. You did a very good job on the whole issue. Thank you for fighting for our kids. The Bradley family Tom, Diane and David	Senior photo of David Bradley.

		Mouth, Brianna insisted I write to you about this retaliation. [Brianna was the subject of an article in Mouth #59, "The Great Wooster High French Fry Conspiracy." Click here to read it.] By Monday the school had likely gotten a copy of the MOUTH and they called Brianna into the "counselor's" office, forced her to strip off her coat, hold her arms out like she was being frisked, and they inspected her for bruises. (She has ataxic hypotonic cerebral palsy.) Then they asked her where she got a two-week-old bruise. When she said "I fall, I have CP," they told her, "Well, we are going to have to turn this over to child protective services..." How many sixteen- (seventeen next week) year-old students do you suppose they pull out of class for such "inspections?" Really, just an opportunity to humiliate her, put her in the "child" category and try to put her in her place! But she's armed with a copy of the MOUTH (it goes with her everywhere), so if they do come calling, she is going to handle it herself, and show them the article! Brianna and Deidre Hammon

		PREVIOUS \| NEXT
Mouth wants you to speak right up right here. Let the world know who you are and what's on your mind. Click here to send us an email. We will print your email address at the bottom of your comments. If you would prefer, we will print your name, city and country instead. Just say so. Some of these letters may appear in the print version of Mouth. We do edit both email and snailmail for length and clarity, but never for meaning. Your meaning is your own, even when we don't agree. We think you'd be surprised how few people pick a fight with us. Come on everybody -- bring it on!		\| INDEX \| ABOUT MOUTH \| SUBSCRIBE \| TOP OF PAGE