Autism Message Boards: Nevada to Wash DC walk for Autism Insurance Reform

SPARKS NEVADA TO WASHINGTON D.C. The Long Walk for “Autism Insurance Reform.”
STEP-BY-STEP… June 9th 2007

CAN YOU HELP ME ESCAPE AUTISM?

MY SON JOSHUA AGE 5

MY WALK,
FOR MY SON AND ALL THE CHILDREN LIKE HIM.

Stride4autism.com

NOTHING LIKE THIS HAS HAPPENED BEFORE NOT LIKE THIS!!!

I am a father of 6 children one of which has Autism and I plan to do whatever I can to help him and others like him!!

On June 9th 2007 I am beginning my walk alone from Sparks, Nevada to Washington DC APPROXIMETLY 2,800 MILES to raise awareness of Autism and point out the injustices being perpetuated on our defenseless disabled children. I want new National legislation written that will require insurance companies to cover care and treatment of Autistic children up to the age of 18. I have had a customized three-wheeled push jogger with carrier donated by www.bergdesign.net to carry all my materials for the trip (valued at over $500.00), Foot Solutions of Reno Nevada is donating my footwear for the trip (a value of $400.00.) My sons therapists have offered help at Sierra Speech and Language. Fast Signs has offered to help with posters, How wonderful I thank them all!!
Please won't you donate? These children deserve our empathy, our love, and most of all they deserve their chance to reach for the brass ring. Please take time to donate to this walk and the cause.
THE CDC HAS JUST ANNOUNCED THAT 1 IN 150 CHILDREN HAS AUTISM!! ASTONISHING!!
AND MOST INSURANCE COMPANIES WILL NOT COVER ANY MEDICAL CARE FOR THEM!!!

The challenges the parents of an AUTISTIC child face is a daily struggle. Not to mention the cost of Therapy after a diagnosis is given. There is very little Therapy available in Nevada for the Autistic child. Of what is available the Medical Insurance Companies will not cover it, any of it. Once a diagnosis is given to your child the insurance companies send a letter to their policy holders telling them to “read their policy exclusions” which excludes Autism, Down Syndrome, and Mental Retardation from receiving any type of treatment or therapy. I hope to change that!! My wife and I are hoping that aside from the insurance changes, we want to get a charter school specifically for children with autism here to provide the therapies and education needed in the Reno/Sparks area. And eventually to open schools throughout the country. So that our children may receive the proper education promised them. Plus with all the donations and sponsorships we will be setting up a scholarship fund for those children with autism whose families have no means to pay for any type of therapy. It will be called “Joshua’s fund for autistic children.”

Once we found out Joshua was autistic I quit my job while my wife works to support a family of 6 (2 of our children have moved out already) and I stay at home with him and his brother
Jacob (2 yrs old) to ensure they are well taken care of, so my dilemma is we will need to pay for a professional to come in and take care of my children while I am gone, so the beginning of the donations will be used to pay for that caregiver. Please help me do this in anyway you can even if it is a prayer, because prayer is very powerful!

All donations received and the use of how those donations are being used will be posted on our website, www.stride4autism.com (officially opening first week of April)

I have found a filmmaker and a production company that say they are onboard and will do a documentary of the walk. But as I stated above I am still trying to raise money for an Autism care professional to come into my home for the 4 months this walk will take me to complete. I will leave on June 9th and hope to reach my destination in October. My wife will be working and I don't really want someone that does not understand Autism to care for my 2 sons. Joshua has been on about 8 different medications in the last year trying to control his anxiety. (No medications worked), well I shouldn't say that, there was one medication that worked well but the side effects are so dangerous even deadly, and it may have given him a permanent twitch in his eye. He still twitches now, and he has been off the medication for 2 months. It breaks my heart to see him struggle the way he does. We do however have him on a wonderful vitamin regimen now and have noticed great improvements! I am very grateful that my Autistic son can talk he is at about a 2 ½ year old level but is coming along and he does go to a Developmental kindergarten, he lacks socially appropriate interaction , but there so many children much worse off than my son. That's why this walk is not just for my son, not just for Autism, but for the millions of children with disabilities that are not getting the care that they so desperately need.

I found out that the state of Wisconsin has a very active Autistic insurance reform and requires that the Katie Beckett (Medicaid program for children with autism) must pay for ABA (Applied Behavior Analysis) therapy for autistic children. There are other methods of behavior therapies also (AIT auditory intervention therapy, Floor time, TEEACH, and Tomatis all of which have done well for these children) It should be our choice of what therapy we want for our children. ABA has been proven time and time again to help more autistic children cope and relate better than any medications, not that these do not help because they can but should be monitored closely. It is safer with good results for many to try and do a GF/CF diet and natural vitamins and probiotics to help heal these children from the inside out. ABA should be required to be paid for by insurance companies or Medicaid nation wide (maybe they could share the cost). ABA therapy costs approx $25,000 to $75,000 per yr for each child (depending on the area you live). So you see why the insurance companies do not want to pay, but typically the ABA therapy is only for 2 years and early intervention is the key!!

Our story began over five years ago when Joshua was born. My wife had a feeling right away that something was wrong. He did not progress "normally" he would not talk he screamed and cried all day long. By the time he was 3 he still was not talking and had been diagnosed as ADHD and developmentally delayed. We began Speech and Occupational therapy for him that our insurance paid for 2 times per week for 7 weeks. In January of 2006 he was re-diagnosed formally by a professional as Autistic. In March when the insurance company found out the “new diagnosis” they sent us a letter saying the would no longer cover Speech or Occupational therapies for him or anything else to do with his autism, and sent us a bill for all the speech and occupational therapy he had received since Jan of 2006. The bill was over $10,000 Thank GOD we were able to get Katie Beckett Medicaid for him. The letter they sent me will be available to read on our website as soon as it is up and running which will be within the first week of April 2007. This startled me in to action, and what I found out is that 80-90% of insurance companies do not cover things like, Autism, Down Syndrome, and Mental Retardation. I think it is deplorable that an insurance company will pay to send someone to rehab that is CHOOSING to abuse drugs, but will not pay for speech therapy for my autistic child that did not CHOOSE to be this way. So in short this is some of the fire that is driving me to do what I am doing (walking to DC to start a reform of insurance companies, starting my own non-profit organization Stride4Autism for autistic children, setting up a scholarship funds through the organization and eventually opening a charter school.)

My wife and I are in the middle of our process of getting our non-profit status off the ground first through Nevada then our Federal application can be submitted after our first step with Nevada is finished, your Donation of any kind will be tax deductible as of April 2007.

Mayor Bob Cashell of Reno NV. And Mayor Geno Martini of Sparks NV. will both separately be presenting us with proclamations for: “NevadaStride4Autism week.”

Each Year during June 9th to the 16th “NevadaStride4Autism week.” we will have a marathon walk and many functions to raise awareness and raise money to provide our scholarships. Also throughout the year we will be holding many fundraisers to keep our scholarships available.

At the time I am in need of: HELP

A caregiver for my 2 boys during my walk for 3 to 4 days a week paid position of course.
Any help with fundraisers.
Any ideas for fundraisers!!!
Places to hold fundraisers.
Workers to help with the fundraising.
Persons to organize events

Donations for silent auctions.
Getting the word out through television and radio commercials and newspaper.
T-shirts to sell.
Flyers.
Posters.
Camping gear for my trip.
Clothing for my trip.
Gift cards for food and water during my walk.
We can do carwashes at our church and would like to have a huge garage sale in April at my church also.
Someone to donate and help setup for a wine and cheese festival with the silent action (perfect place for wine vendors to promote their wine.)
Possibly a concert.??
A bowling night for stride4autism.?
And of course monetary donation as that is the key to promote this and provide what we need to set up functions and most of all for our children’s scholarships.

We need help we have never raised money and really do not know where to begin so please HELP!!!
I am scheduled for an interview the first week of April 2007 on DISSABILITY NEWS RADIO out of NY but will broadcast NATIONALLY.

WITHOUT YOUR HELP THIS PROJECT WILL NOT SUCCEED SO PLEASE IN ANY WAY HELP THIS CAUSE, WE CAN CHANGE THINGS FOR OUR CHILDREN OF CURRENT AND THOSE TO COME!! IF WE DO NOT STAND UP FOR THESE CHILDREN WHO WILL?

THANK YOU FOR YOUR TIME AND PATIENCE TO READ MY STORY,

GARY KUHRE
775-626-6895
stride4autism@yahoo.com PLEASE EMAIL ME WITH ALL YOUR COMMENTS AND QUESTIONS.
www,stride4autism.com website will be up by the first week of April.

Please see the attachment of our RENO GAZETTE JOURNAL INTERVIEW BELOW

RGJ article:

Disconnected
ZAMNA AVILA
RENO GAZETTE-JOURNAL
Posted: 2/20/2007

Shannon Springer talks with her daughter Joy, 7, who is autistic. Springer, who is certified in different treatment methods, was inspired to start up a lending library.
Joy Springer, 7, who has autism, plays with a stuffed animal while her mother Shannon tends to her sister Avery, 5, in Joy’s therapy room in their Sparks home.
Seven years ago today, Sparks resident Shannon Springer gave birth to a beautiful child with red hair and bright blue eyes, who she named Joy.
As time went on and her daughter neared her second birthday Shannon Springer became concerned about her child's inability to speak and behavior that seemed odd.
"She was addicted to a particular cartoon, 'Rolly Polly Olly,' and it was like she was looking right through you," said Springer, 32. "She was my first daughter, and I didn't know what to expect."
Eventually, Springer learned from a neurologist that Joy had severe autism.
"Once I found out I tried to learn as much as possible so I can help my child," said Springer, who became certified in different methodologies and was inspired to start up a lending library of information on autism.
Autism is a series of developmental disabilities, known as autism spectrum disorders, including Asperger's disorder, pervasive developmental disorder -- not otherwise specified, autistic disorder, childhood disintegrative disorder and Rett's disorder. These disabilities cause substantial impairments in social interactions, communication and behaviors.
A recent study by the Centers of Disease Control and prevention published Feb. 8, found that one in 150 8-year-old children in several areas of the country were in the spectrum and that those disorders occur four times more readily in boys than in girls.
For a child to be labeled autistic he or she must display three characteristics, said Dr. Erika Ryst, a child and adolescent psychiatrist at the University of Nevada, Reno:
Social interaction impairments
Communication impairments
Restrictive, repetitive, stereotypical interests of behavior or pattern of activities
"The social (component) is the most important," Ryst said. "Kids with autism have a hard time with that because there is a part of their brain that controls their social interaction that is damaged."
While researchers have learned much about the symptoms and treatments for autism spectrum disorders, the causes are still unclear. Some researchers believe there are genetic factors involved, and some believe there also are environmental factors. Some parents maintain that mercury from vaccines also plays a role in the development of autism spectrum disorders.
"We think there is a genetic link, but we are not at the level where (autism spectrum disorders are) completely understood. There are a lot of theories and ideas."
Physical ailments
Toni Richard, who helped create the Reno Autism Information Network, a support group for parents of children on the autism spectrum, said there also are physical ailments associated with the disorders.
"Autism is not just a neurological problem, it is also biological," said Richard, whose son Tyler, 6, is autistic.
"Many children have weak immune systems, gastrointestinal problems, digestive problems and allergies. Most of our kids don't detoxify; a lot of them don't even sweat and many have hypersensitivities. So, how you cook or clean your house is totally different."
Different degrees
of autism
However, those physical ailments do not seem to have affected 7-year-old Sparks resident Gunnar Altenburg.
"He doesn't have any allergies that we have discovered," said his father, Rich Altenburg, an English teacher at Hug High School in Reno. "We have focused our attention more on his interaction with the world, not so much on his diet or behavior. I would say get your child out in the world every day, go to the libraries, zoos, museums and expose your autistic child to as many things in the world over and over and over again."
When Gunnar was 2 years old, his first words were Korean, the native language of his mother, but then they noticed his speech skills flatlined. The Altenburgs also noticed their child would take a deck of cards, ties and feathers to form patterns on the floor.
On one occasion, Rick Altenburg tried to play catch with his son, and he noticed his son would place one of his hands palm up and the other palm down. When he tried to have Gunnar use the other hand facing upward, Gunnar would face his other hand downward. In February 2002, Gunnar was tested and evaluated as high-functioning autistic.
"Sue (my wife) and I recognize that it's a lifetime commitment to doing the best for our child so that he can someday be somewhat independent," Rick Altenburg said. "The dreamer in me would like to be able to catch lightning in a bottle and have enough money so I could set Gunnar up for life."
Sparks resident Tracey Mills can empathize. She knows there is a probability that her 8-year-old son, Ryan, who has Asperger's, will be living with her and her husband for the rest of his life.
Ryan experienced problems with acid reflux since he was born. He was developmentally delayed in crawling and walking. By the time he was 3 years old, a relative noticed his voice was monotone, he didn't make eye contact when shaking hands with someone, he often would wear goggles, and if you asked him a question his favorite phrase was, "Sharks are in the water."
"It was just like he was in his own little world," Mills said.
Nevertheless, with the help of his teachers, Ryan, who is now in the second grade, recently completed a book report on Thomas Edison.
"Whatever God has given me, I just go with the flow," Mills said. "I sit here and I say to my husband that we are so blessed. At least he can tie shoes and make himself a peanut butter sandwich."
Early treatment vs. affordable treatment
Ryst, the psychiatrist at UNR, said that the one thing that can help children with autism reach some level of independence is early treatment. However, the costs associated with such treatments can soar to the thousands of dollars and many insurance companies do not cover children with autism.
Lori and Gary Kuhre, a Sparks couple, said their healthcare options for their child Joshua, 5, are limited because their health insurance doesn't cover treatments for autistic children.
"There is no easy road," said Lori Kuhre, a certified respiratory therapist. "If we make too much money Joshua wouldn't be able to get Medicaid."
Gary Kuhre, who became a stay-at-home dad to care for Joshua, is planning to walk to Washington, D.C., in hopes of creating awareness about autism and the struggles so many parents face with insurance companies that don't want to recognize the disorder and to raise money for other families who can't afford treatments.
"I feel like I have to live forever so that my son doesn't end up in an institution," Gary Kuhre said. "There are people that are even worse off than us, and they can't afford anything."
Springer said she also would like to find a way to help people who can't afford services and perhaps someday open a school that has adequate aid for children in the autism spectrum that is fully inclusive. She also shares the Kuhres' concerns about how their mortality will impact the care of her child.
"People say, 'It must be really hard to have a child with autism,'" Springer said. "It's not hard, the system is what makes it hard. You need to put them in a space where they are going to be amongst their peers because eventually that's where they are going to be."

INFORMATION ABOUT AUSTISM
For details about Shannon Springer's lending library call 354-2060, 830-8063 or send an e-mail to Danspurple@hotmail.com.
To learn more about the signs of autism visit www.cdc.gov/actearly, and for more details about the CDC's work on autism visit www.cdc.gov/autism.
Support group: R.A.I.N. meets every first Friday of each month. Details: call Toni Richard at 324-5085 or e-mail isign3550@sbcglobal.net.
For details on sponsoring Gary Kuhre's walk to Washington, D.C. send an e-mail to jeezus_n_us@yahoo.com. Or stride4autism@yahoo.com.

Together we can do this, we can do anything!!

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I can do all things through Christ who stengthens me!