February 28, 2008
By John GreinerCapitol Bureau
Wayne Rohde and his wife, Robyne, choked back tears as they spoke Tuesday about families coping with autistic children and not being able to get health insurance coverage.
The Rohdes, of Edmond, were among several families with autistic children who went to the state Capitol to talk about fighting for Sen. Jay Paul Gumm's bill to mandate insurance coverage for autism.
Because he lacked the votes for passage, Gumm didn't have the bill, Senate Bill 1537, heard in committee. But he plans to attach amendments on autism to other bills on the Senate floor.
The legislation is called "Nick's law” after the Rohdes' 10-year-old son.
Our inspiration
Wayne Rohde's emotions over the issue caused him to pause briefly as he thanked "the children for being our inspiration and being our motivation for getting this done.”
Later, his wife, her voice breaking, talked briefly.
"It's so important to these children to have this law in the state. We have no place else to turn,” she said.
Wayne Rohde said a child is diagnosed with autism every 20 minutes. He said autism is not covered by health insurance, adding, "Why is there discrimination and why is there exclusion for autism diagnosis?”
Another Edmond parent, Rodney Miller, talked about dealing with his son's autism.
His family is fortunate that it can borrow money and probably will end up $300,000 in debt to get treatment for his son, he said.
"We hear an awful lot in this building about family values. I don't believe you have the right to talk about family values unless you support policies that value families like this,” the Durant Democrat said. "This is why we were sent here.”
Thursday, February 28, 2008
Senators, Families of Autistic Children Press for Autism Coverage at State Capitol
Surrounded by parents and their autistic children, Sen. Jay Paul Gumm and Sen. Mary Easley discuss discuss legislative efforts to require health insurance policies to cover autism related diagnosis and treatment at a press conference Tuesday at the State Capitol.
Autism afflicts one in every 150 children, yet there is no requirement that diagnosis and treatment be covered by Oklahoma health insurance policies.
Tuesday, a group of Oklahoma families joined Senator Jay Paul Gumm at a State Capitol news conference to promote “Nick’s Law.” The proposal, initially contained in Senate Bill 1537, would require health insurance policies cover diagnosis, treatment and therapy for autism spectrum disorders. Currently, at least 17 states – including Texas – have similar mandates.
“These families and children face challenges that – God willing – most of us never will face,” said Gumm, a Democrat from Durant. “I believe it is morally wrong and financially irresponsible to leave these children and their families behind.
“If insurance companies excluded from coverage maladies like broken bones or respiratory problems, Oklahoma families would be storming the Capitol demanding action. Autism is as great a health challenge as any family might face – and it should be covered by health insurance.”
Autism is a bio-neurological disability that generally appears before the age of 3. Individuals with autism often have difficulties in communication, as well as social interaction. They also suffer from numerous physical ailments including allergies, asthma, epilepsy, digestive disorders, persistent viral infections, and sleeping disorders.
SB 1537 was denied a hearing in the Senate Retirement and Insurance Committee. At the news conference, Gumm announced that while that bill is dead, the effort to pass Nick’s Law is only just beginning.
“Parents of autistic children struggle every day to improve their children’s lives,” he said. “We owe it to these parents and their children to fight just as hard as they do. That is why Nick’s Law is being filed as a floor amendment on a series of bills; these families will not be ignored and we will have this discussion in the Senate.”
Wayne Rohde is the father of 10-year-old Nick – inspiration for the bill. He said families that have been denied autism coverage are struggling financially and, with limited healthcare options available, at a loss for help.
“Nick’s Law simply says that parents who pay more than $1,000 per month in health insurance premiums can count on that insurance to help with treatments,” he said. “The treatments cost as much as $3,000 a month. We aren’t looking for a hand out, but rather a hand up.”
Gumm said the mandate is a good investment for taxpayers. “Setting aside for a moment the fact that this mandate would change lives for the better, it also will save taxpayers money,” he said. “Early diagnosis and treatment is the best way to ensure autistic children have a chance of reaching their full potential and not become wards of the state.”
Rohde said the fallout for families facing autism is far reaching. “Divorce rates are higher among families with autistic children,” he explained. “Bankruptcy rates are higher, and the overall family unit is stretched thin trying to find the answers to help their children lead the most normal and productive life possible.”
Gumm concluded by noting that the words “family values” are thrown around the Capitol often. “I do not believe you can talk about ‘family values’ unless you support policies that value families,” he said. “The fight for Nick’s Law comes down to this question: Do we give these children a chance to become everything God intends for them to be?
“If every legislator who says they stand for ‘family values’ really stands for these families, then that answer should be a resounding ‘yes’.”
For more information contact:
Senator Gumm's Office: (405) 521-5586
Monday, February 25, 2008
Senator Gumm announces Press Conference
The State of
OFFICE OF SENATOR JAY PAUL GUMM
Atoka,
February 25, 2008
MEDIA ADVISORY
Contact: Senator
State Capitol: (405) 521-5586
Durant: (580) 924-2221
Senator, Families with Autistic Children
Schedule Capitol News Conference
Senator Gumm and the parents will discuss legislative efforts to require health insurance policies to cover autism related diagnosis and treatment. Gumm, D-Durant, was author of SB 1537, also known as “Nick’s Law”; that measure was not heard in the Senate Retirement and Insurance Committee. Among the parents joining Senator Gumm will be Wayne Rohde, the father of Nick Rohde, the inspiration for “Nick’s Law.” Mr. Rohde and other parents will be available to discuss the challenges faced by families with autistic children.
Nick's Law Update Feb 25, 2008
Nick’s Law is alive and well!
Senators Gumm and Anderson decided on Thursday, Feb 21st, not to present SB 1537 – Nick’s Law - in the Senate Insurance Committee, for fear that it would be voted down. Senate rules prohibit the languageof any bills that were voted down in committee from being used in other bills for the rest of the year. The deadline to hear Senate bills in committee was Thursday, so technically, SB 1537 is dead.
But our Senate authors have vowed to find other germaine bills in which to insert the languagecontained in SB 1537. So Nick’s Law will now be sent to the entire bodyof the Senate as an amendment on another insurance bill. The senators’ decision givesthe language of Nick’s Law several more options for passage out of theSenate. The actual bill or bills that Nick’s Law will be amended into will be determined in the next several days. We have 3 weeks to vote the bill out of the Senate (deadline – March 13th).
Nick’s Law in the House, HB2459 by Rep. Colby Schwartz is still alive as well. Currently, it awaitsa hearing in the House Economic Development Committee. We have until March 6th to have Nick’s Law reported out of this committee.
We are still planning on the next Parent’s Day at the Capitol for Tuesday, March 4th. We will be concentrating on the House. It is appearing that our first trip created a lot of interest and opened the eyes of a lot of legislators. We need to keep up the pressure on our your legislator. Also remind your neighbors and friends to do the same.
More information to be announced later this week as the specifics are determined.
Thank You
Nick’s Law Steering Committee
Senators Gumm and Anderson decided on Thursday, Feb 21st, not to present SB 1537 – Nick’s Law - in the Senate Insurance Committee, for fear that it would be voted down. Senate rules prohibit the languageof any bills that were voted down in committee from being used in other bills for the rest of the year. The deadline to hear Senate bills in committee was Thursday, so technically, SB 1537 is dead.
But our Senate authors have vowed to find other germaine bills in which to insert the languagecontained in SB 1537. So Nick’s Law will now be sent to the entire bodyof the Senate as an amendment on another insurance bill. The senators’ decision givesthe language of Nick’s Law several more options for passage out of theSenate. The actual bill or bills that Nick’s Law will be amended into will be determined in the next several days. We have 3 weeks to vote the bill out of the Senate (deadline – March 13th).
Nick’s Law in the House, HB2459 by Rep. Colby Schwartz is still alive as well. Currently, it awaitsa hearing in the House Economic Development Committee. We have until March 6th to have Nick’s Law reported out of this committee.
We are still planning on the next Parent’s Day at the Capitol for Tuesday, March 4th. We will be concentrating on the House. It is appearing that our first trip created a lot of interest and opened the eyes of a lot of legislators. We need to keep up the pressure on our your legislator. Also remind your neighbors and friends to do the same.
More information to be announced later this week as the specifics are determined.
Thank You
Nick’s Law Steering Committee
Sunday, February 24, 2008
Bill would help students with autism
Feb 24, 2008
By Wendy K. Kleinman
Staff Writer, The Oklahoman
Jaymee Muns is the only student in her classroom; the 11-year-old has both a teacher and an aide. She has been known to become violent, even breaking her aide's nose once, because she's learned she can use her behavior to put learning on hold. Her mother says she is afraid middle school will be a nightmare.
Joy Lauffenburger, 15, makes good grades. She has had a personal aide in school since the second grade but is being weaned away so she can become more independent. Her mother said Joy has an advantage because she entered the school system before the influx of students with similar needs.
Jaymee and Joy have autism. Jaymee has rarely been in a regular education classroom; that is all Joy has ever known. One is regressing; the other is thriving. Parents of the students said including the children in regular classrooms and giving support and training to regular education teachers would benefit children with spectrum disorders like autism.
That's the goal of a bill (SB 1686) filed by Sen. Mary Easley, D-Tulsa, that calls for an emphasis to be placed on autism in schools. About 2,000 of the state's 95,000 students receiving special education services have autism, said Misty Kimbrough, assistant state superintendent of special education services.
Battle for inclusion
Jaymee started school in Putnam City, moved to Moore and now is in Stillwater.
"My goal was, Jaymee needs to be in kindergarten with all the other kids,” Shawna Muns said. At the time, she told herself, "I don't see why she can't. She can repeat every song she's ever heard; certainly she can repeat her ABCs,” she said. "I have seen children who are included; as long as they are appropriately supporting the children, the children flourish,” Muns said.
Even within her family, Jaymee has been an inspiration: She inspired her mother to pursue a doctorate in psychology, her 19-year-old sister Ashlee to work toward becoming a clinical psychologist and her 16-year-old brother Kevin, already a college student, to set his sights on neurology.
When asked to comment on Jaymee's situation, Stillwater special education director Renee Holladay said the district cannot talk about individual students. She said accommodations for students with special needs are determined on an individual basis through a team process involving a parent, administrator, special education teacher and regular teacher.
In Edmond, Joy fits the profile of a student who does well when included in regular education classes. Joy's aide no longer helps her with academic work, just social skills. Still, her mother, Melinda Lauffenburger, said the road has been rough. "I think the thing that most parents tell me is we don't know what's available and what isn't, and then the thing that teachers tell me is there's so much IEP (individualized education plan) paperwork that they don't have time to think creatively. The process is a lot more of a legal battleground, and the kids get lost in that,” said Lauffenburger, who is the director of both the Edmond and Oklahoma Family Center for Autism.
What can be done
Lauffenburger said there are five things children with autism have in common: issues with communication, social interaction, behavior, organization and sensory stimulation. The idea behind Easley's bill is to address those issues by putting an emphasis on training for teachers of prekindergarten through third-grade students so they learn to recognize symptoms and provide positive support for students with autism, said Kimbrough, the state official.
Easley could not be reached for comment, but Kimbrough said people in her office had talked with the senator about the bill. Rene Daman, director of the Oklahoma Autism Network, said there is a gap in training for regular education teachers — as well as other school personnel ranging from principals to cafeteria workers.
"In the world of autism, there's not a one-size-fits-all treatment approach, and so people will seek different treatments based on the individual needs of their child, based on the individual preferences of the family, and different districts have professionals that have training in different areas,” Daman said. Daman has been a therapist for children with various disabilities for about 15 years. Providing more training will become even more important as new students enter public schools because one in every 150 babies now is born with autism, she said.
Existing help
The State Department of Education has provided training about autism since the early 1990s, Kimbrough said. Most of the teachers who attend the training are special education teachers, she said, although she added that there is always a waiting list for the classes. The department also provides support through programs like Project PEAK at the University of Oklahoma Health Sciences Center, she said.
In addition, the state developed a pilot program in Putnam City this year where infants and toddlers with spectrum disorders spend the day with typically developing peers, Kimbrough said. "For some kids, the right services in the early years can make the difference in their long-term outcome, and our state cannot afford to not seize that opportunity because parents will die, and they will become wards of the state,” Lauffenburger said.
By Wendy K. Kleinman
Staff Writer, The Oklahoman
Jaymee Muns is the only student in her classroom; the 11-year-old has both a teacher and an aide. She has been known to become violent, even breaking her aide's nose once, because she's learned she can use her behavior to put learning on hold. Her mother says she is afraid middle school will be a nightmare.
Joy Lauffenburger, 15, makes good grades. She has had a personal aide in school since the second grade but is being weaned away so she can become more independent. Her mother said Joy has an advantage because she entered the school system before the influx of students with similar needs.
Jaymee and Joy have autism. Jaymee has rarely been in a regular education classroom; that is all Joy has ever known. One is regressing; the other is thriving. Parents of the students said including the children in regular classrooms and giving support and training to regular education teachers would benefit children with spectrum disorders like autism.
That's the goal of a bill (SB 1686) filed by Sen. Mary Easley, D-Tulsa, that calls for an emphasis to be placed on autism in schools. About 2,000 of the state's 95,000 students receiving special education services have autism, said Misty Kimbrough, assistant state superintendent of special education services.
Battle for inclusion
Jaymee started school in Putnam City, moved to Moore and now is in Stillwater.
"My goal was, Jaymee needs to be in kindergarten with all the other kids,” Shawna Muns said. At the time, she told herself, "I don't see why she can't. She can repeat every song she's ever heard; certainly she can repeat her ABCs,” she said. "I have seen children who are included; as long as they are appropriately supporting the children, the children flourish,” Muns said.
Even within her family, Jaymee has been an inspiration: She inspired her mother to pursue a doctorate in psychology, her 19-year-old sister Ashlee to work toward becoming a clinical psychologist and her 16-year-old brother Kevin, already a college student, to set his sights on neurology.
When asked to comment on Jaymee's situation, Stillwater special education director Renee Holladay said the district cannot talk about individual students. She said accommodations for students with special needs are determined on an individual basis through a team process involving a parent, administrator, special education teacher and regular teacher.
In Edmond, Joy fits the profile of a student who does well when included in regular education classes. Joy's aide no longer helps her with academic work, just social skills. Still, her mother, Melinda Lauffenburger, said the road has been rough. "I think the thing that most parents tell me is we don't know what's available and what isn't, and then the thing that teachers tell me is there's so much IEP (individualized education plan) paperwork that they don't have time to think creatively. The process is a lot more of a legal battleground, and the kids get lost in that,” said Lauffenburger, who is the director of both the Edmond and Oklahoma Family Center for Autism.
What can be done
Lauffenburger said there are five things children with autism have in common: issues with communication, social interaction, behavior, organization and sensory stimulation. The idea behind Easley's bill is to address those issues by putting an emphasis on training for teachers of prekindergarten through third-grade students so they learn to recognize symptoms and provide positive support for students with autism, said Kimbrough, the state official.
Easley could not be reached for comment, but Kimbrough said people in her office had talked with the senator about the bill. Rene Daman, director of the Oklahoma Autism Network, said there is a gap in training for regular education teachers — as well as other school personnel ranging from principals to cafeteria workers.
"In the world of autism, there's not a one-size-fits-all treatment approach, and so people will seek different treatments based on the individual needs of their child, based on the individual preferences of the family, and different districts have professionals that have training in different areas,” Daman said. Daman has been a therapist for children with various disabilities for about 15 years. Providing more training will become even more important as new students enter public schools because one in every 150 babies now is born with autism, she said.
Existing help
The State Department of Education has provided training about autism since the early 1990s, Kimbrough said. Most of the teachers who attend the training are special education teachers, she said, although she added that there is always a waiting list for the classes. The department also provides support through programs like Project PEAK at the University of Oklahoma Health Sciences Center, she said.
In addition, the state developed a pilot program in Putnam City this year where infants and toddlers with spectrum disorders spend the day with typically developing peers, Kimbrough said. "For some kids, the right services in the early years can make the difference in their long-term outcome, and our state cannot afford to not seize that opportunity because parents will die, and they will become wards of the state,” Lauffenburger said.
Thursday, February 21, 2008
Senate Committee passes Steffanie's Law
Note to readers: Passage of Steffanie's Law is very good news for Nick's Law.
Associated Press and News9.com
A state Senate committee has passed a bill requiring insurance companies to pay for routine care of patients involved in clinical trials.Steffanie's Law was passed on Thursday in the Health and Human Resources Committee five to two, after the committee heard from Monty Collings, the father of the 18-year-old for whom the bill was named.
Steffanie Collings, a young brain cancer patient, was hit with $400,000 in medical bills after a private insurance carrier stopped paying her routine healthcare costs. After Steffanie went through a bone marrow procedure in a clinical trial, Collings' insurance company refused to pay routine bills for doctor's visits, blood tests and other procedures needed in her fight against cancer.
Sen. Andrew Rice, the bill's author, said it was a matter of fairness. He said Medicaid and Medicare patients can go through clinical trials and still have their routine care compensated.
Nick's Law is alive and well!
It is official. We are heading with Plan B for Nick's Law in the Oklahoma Senate.
Announcement with details to be made later today!
Announcement with details to be made later today!
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