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Autism and Insurance in Iowa
Oregon is not the only US State having insurance problems when regarding Autism. Back in November 2008, I read some interesting articles which also included great news video reports from out of Iowa via http://www.whotv.com news web site.
However the articles are now archived and WITHOUT providing the videos.
You can Read the articles under Autism and Insurance here:
( http://www.whotv.com/search/dispatcher.front?Query=autism+and+insurance&target=article )
Fortunately, I have saved the text and news video reports (because sometimes news reports are archived or are no longer offered)
Read / Watch below the News reports regarding Iowa: Autism and Insurance.
This is the first report I was able to find dated Nov 10th, 2008.
I was only able to find a news video report on this one.
Autism and Insurance - Part 1 of 3
Below is the SECOND news report with text and the video from Nov 11th, 2008
November 11, 2008--Last summer, Danielle Sharpe and Ethel Faust received similar denial letters from Wellmark insurance. They both have autistic sons, and both wanted speech therapy. Both women appealed the denials. Ethel's was overturned. Danielle's was not.
"Well of course immediately I was looking for the next step," says Danielle, "Which was external review." Danielle contacted the Iowa Commissioner of Insurance with the request. Wellmark was ordered to send Spencer's information to an independent reviewer, "Clinix Healthcare" in Ohio.
Danielle received a copy of the information a few weeks later. In it Wellmark describes nine-year-old Spencer as having childhood psychosis. Danielle says she was shocked. "I called and told them my child was autistic, not psychotic and I wanted to know where she got that information!"
According to Danielle, the Wellmark employee told her the information was contained in Spencer's medical history. However, the employee couldn't provide proof of that, or explain how the error happened.
"I told her he's never been considered psychotic, his physicians have never used that word, and it does not describe my son!" Danielle says the employee assured her that if the information was wrong, it would be corrected and a new letter would be sent to Clinix.
And as promised, a new letter was sent to both the reviewer, and the Sharpe's. Danielle received the second letter a week later. "They'd corrected psychosis and now my son was autistic and had celiac disease, a bowel disorder that Spencer's never been tested for! I called again and asked, do you even have the right chart? How incompetent are you people?!?"
The response wasn't what the Sharpes were hoping for, and Danielle worried the information would have a negative impact on Spencer's case. "It is unbelievable," Danielle says while trying to control her emotions. "I couldn't believe this was happening. I couldn't believe they were going to allow this description of my son. This committee is going to determine treatment for my child and what they're reading about him isn't even him!"
In spite of that, the Sharpes eventually got good news from Clinix. A letter from the company tells them that Wellmark's denial is being overturned. "Oh yeah, I was jumping for joy! I was excited. It was a long process."
One that Danielle says is well worth it in the end. Her persistence even paid off in the form of a meeting with the Iowa Insurance Commissioner and two representatives from Wellmark. Danielle says she's pleased with the meeting. "I do think the Wellmark officials agreed that they need to look at the speech/language policy and perhaps add autism to that."
Wellmark refused to do an interview for this story, but sent us a written statement outlining three main points:
1) "Due to medical privacy laws, Wellmark can't talk about specific cases or members. Wellmark is a supporter of the external review process."
2) "As a corporate culture, Wellmark is committed to find a way to approve member claims, rather than deny them."
3) "Wellmark is committed to ensuring its policies and procedures reflect the most current medical and insurance industries best practices. For example, Wellmark is involved in a dialogue with representatives from the autism community in Iowa to review our policies and determine whether adjustments need to be made."
Danielle has faith the company will act. "They seem concerned. It's the right thing to do. I hope they follow through."
Autism and Insurance - Part 2 of 3
Below is the THIRD news report with text and video from Nov 12th, 2008
NOTE: This report includes a family with twin boys, like what we have (one has Autism, the other does not), only this family has IDENTICAL TWINS and having a really hard time getting insurance for their one son with Autism.
November 12, 2008--Ethel Faust and Danielle Sharpe have a lot in common. They both have medical degrees. They both have sons with autism. And both have struggled to get coverage and services.
"Nationally, children with autism are not getting the services that evidence-based medicine suggests they need," says Dr. Faust. Both women have been involved in the autism community for years, and now Danielle sits on the state's new autism council.
"The hope is to identify gaps in the system," says Dr. Sharpe, "healthcare, insurance, education, government." State senator Daryl Beall helped create the council last year. Its purpose is to study the needs of people with autism, and develop a support system for them. Senator Beall says it's easy for legislators to forget that these are real people, and not just statistics.
"This affects the entire family," says Beall, and he should know. His grandson Drew has autism. "As a grandpa, I have a lot of questions, and as a lawmaker, I also saw an epidemic."
Autism is the fastest growing developmental disability. According to the centers for disease control, up to one-point-five million Americans are living with it. One in every 150 children born in the U.S. has autism. Boys are four times more likely than girls to have the disorder.
In appearance, seven-year-old twins Jace and Drew Beall are identical, from their adorable faces to their buzz cuts. "They have a special relationship," says their dad Scott. "But it's not the relationship we thought of when we found out we were having twins and we saw baby A and baby B in the ultrasounds."
Scott and Kim say life was crazy when the boys were babies, and a lot of things were a blur. But they did notice differences. Jace would play with toys, Drew examined them. Jace started talking, Drew stopped. Jace could count to ten, drew could count backward from twenty.
"Kim and I, having worked in the field, had a trained eye," says Scott. "And then being a twin, there was a built-in measuring stick." Scott worked at daycare for exceptional children, Kim at a group home. Both were thinking autism right away says Kim, "But we were also thinking we're a little ultra sensitive to it, or paranoid."
But the diagnosis confirmed their fears and recently, the system has disappointed them. Scott explains that the family recently got life insurance, but Drew doesn't qualify because of autism. "We did see neurologist," says Kim. "His exact words were, he would do the MRI but in order to cover it, he couldn't state that autism was the reason he was doing it."
Drew has been able to get speech and language services, but not because of insurance. He's on the home and community based services mental retardation waiver. It's funded through Medicaid and it's a huge help to thousands of Iowans. But often they have to wait for evaluations and services. Sometimes up to a year.
Just last week Danielle Sharpe found out her son Spencer will have to wait at least three months to get an evaluation at a local hospital. After that, he'll be on a waiting list to get speech therapy. "You get coverage, you get waiver coverage and you sit and wait because there's not enough providers," says a frustrated Danielle.
Tony Merfeld has been an educator for 27 years and agrees that there is a lot of red tape. Her business, "Metro West Kids" offers speech and language services and stays busy with kids who have autism. "Autism is a language-based disorder and speech/language services are nearly 100 percent recommended for children on the autism spectrum." Merfeld says Iowa is better than many states, but there's a long way to go in offering services, support and coverage. "It seems that we're putting up roadblocks for families and children for services that they should be able to get," says Merfeld.
Kim Beall says the disorder is misunderstood. "It's kind of a lonely world we live in at times." That's why Kim and Scott are sharing their story. They say it's important to spread awareness, and hopefully it will make a difference for Drew and Jace, and all families living with autism.
"It's not what I envisioned as a father," says Scott. "I was figuring out who would be point guard, who would be quarterback and that's not the life we have, but that's ok. We're just doing the best we can just like all families living with autism."
Autism and Insurance - Part 3 of 3
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