Monday, October 27, 2008
By MICHAEL MCNUTT
Published: October 27, 2008
EDMOND — More behavioral specialists to help tutor autistic children in public schools could be ready to provide services in the state in a couple years.
The University of Central Oklahoma is offering a degree program to prepare students to become nationally board certified behavior analysts who specialize in autism, a complex developmental disability that affects the ability to communicate and interact with others.
The post-graduate degree program is for those who already have a master’s degree or are in a master’s degree program, said Mary Sweet-Darter, a UCO associate professor of psychology who leads the program. It takes about two years to complete the coursework, she said.
Those completing the courses and 1,600 hours of internship are eligible to take a national test to become a board-certified behavioral analyst, she said. Twenty-three students are enrolled in the UCO program,
"We don’t want these services to be limited to the medical field or private practice,” Sweet-Darter said. "We want to get these skills into the public schools.”
"If you go right now into most public schools, you won’t see a one-on-one tutor with every small child with autism,” Sweet-Darter said. "You’ll see one teacher and one aide and they’re trying to teach several children with autism.”
BY MICHAEL MCNUTT
Published: October 27, 2008
Oklahoma lacks enough therapists and behavioral specialists to take care of the state’s autistic children, according to the preliminary findings of a pilot program.
Thirty families selected to take part in the autism two-year pilot project each could spend up to $12,360 a year on services for their autistic child.
"What we discovered was there are so few providers of those services to these families that the spending on the behavior therapies was pretty small,” said Jim Nicholson, director of the developmental disabilities division of the state Department of Human Services. "There’s a lack of service providers that had that kind of specialty training.
"There aren’t enough, particularly, skilled behavioral practitioners,” he said.
Each family on average spent about $4,500 a year on services for their autistic child, he said.
The pilot program is to expire at the end of next month, sooner than expected because DHS officials "learned what we had hoped from the pilot,” Nicholson said. "The pilot did its job, and two years was enough.”
It’s unknown how many autistic children are in the state. According to the national Centers for Disease Control and Prevention, one in every 150 children in the U.S. is diagnosed with autism. It is considered the fastest-growing developmental disability. Research indicates early intervention can help.
A parent’s reaction
Deborah Decker of Norman, a parent whose family was chosen to take part in the study, said she is disappointed the program is ending.
"It just opened up a lot of avenues that we wouldn’t have had otherwise because it’s just so expensive,” said Decker, who developed a plan for her 6-year-old autistic son. "It was nice just to have that money to really do some intensive treatment with him.”
Parents in the program were told how the money could be spent and what services might be best for their child, Decker said. Each family drew up a budget on how the money would be spent.
Decker said her family spent about $7,000 a year and would have spent more had more services been available.
Most of the money her family spent was on applied behavioral analysis, which most insurance companies don’t cover, she said. Other expenses were for therapy for her son and occasional baby-sitting expenses.
She said she spent more than the program’s average because her family was able to hire applied behavioral analysis tutors from their public school district. Because of the applied behavior treatment, her son now can answer "yes” and "no” questions, she said.
Nicholson said the pilot program also looked at ways families with autistic children could support each other. But results showed parents were so exhausted from taking care of their own children they were too weary to take on the task of helping others, he said.
Of the 30 families selected to take part in the program, 15 were from the Oklahoma City area and 15 were from the Tulsa area.
Several parents who came to the state Capitol earlier this year to speak in favor of autism legislation said they pay thousands of dollars each month for treatment for their children, with some traveling out of state for help. In most cases insurance won’t cover all the fees.
Tuesday, October 21, 2008
By Isadora Lapowsky
Monday, October 20th 2008, 1:22 PM
At a time when an increasing number of states are requiring health insurers to pay for behavioral therapy for autism, the action group Autism Speaks is pushing for broader adoption of such coverage.
The advocacy group reportedly is campaigning to have New Jersey, Virginia and Michigan enact laws guaranteeing coverage. If they do, they would join six states (Texas, Pennsylvania, Arizona, Florida, South Carolina and Louisiana) that have recently implemented the legislation.
RELATED: JENNY MCCARTHY AND AMANDA PEET ARGUE OVER AUTISM
By the end of 2009, the group plans to push for similar action in at least 10 other states. J.P. Wieske, an insurance lobbyist, called the effort "the hottest trend in mandates we've seen in a long time. It is hard to fight them."
In New York State, policies are prohibited from excluding coverage for the diagnosis and treatment of ASD, including autism.
For many lawmakers, the personal experiences tied to the bills make it difficult to reject them. Parents tell about how well behavior therapy has worked for their children, giving certain bills nicknames like "Steven's Law" and "Ryan's Law."
Lobbying for insurance coverage has now become one of Autism Speaks' top priorities. "It's the No. 1 thing we hear from parents," said Elizabeth Emken, the organization's vice president of government relations. "What's more difficult than knowing there's an effective treatment for your children, but you can't afford to offer it to them because it's not covered by insurance?"
Researchers, however, say that therapy may only be really effective for young children. "You could make a decent case for the little kids of up to 6 or 7 that [insurance mandates] would be appropriate," said Tristram Smith of the University of Rochester Medical Center in New York. Smith, who co-wrote a study on autistic children in 2000, said, "It would be hard to make that case for older kids."
Despite opposition, Autism Speaks is continuing its drive with extra force in this election year. Recent economic bailout measures approved by Congress included a requirement that health insurance companies provide equal coverage, in general, for physical and mental health. Though that does not always include people with autism, Emken sees the law as a good sign.
"We hope it sets the stage for the Congress and the next President to continue this effort to end discrimination in the health insurance marketplace," she said. "Whichever party is elected, autism will be on the table and be a major point of discussion. There may have to be a federal mandate."
Sunday, October 19, 2008
Published on Saturday, October 18, 2008 7:35 PM AKDT
Mat-Su Frontiersman - Wasilla, Alaska
Hello Alaska! We are writing from Oklahoma to thank everyone who has supported Governor Palin in her bid for the White House. Why is someone from Oklahoma writing to the town of Wasilla?We are writing not only as enthusiastic supporters of Senator McCain and Governor Palin, but as parents of a severely autistic child, who for the first time has heard from those running for highest office in the land discuss autism.As parents who work for a living, have good medical insurance, and want to care for our children, we are constantly forced to fight for every service offered by the public schools and pay out of pocket for the necessary medical treatments our children need because insurance companies in Oklahoma refuse to cover the cost of diagnosis and treatment of autism.
We nearly had a bill passed last session to mandate Oklahoma insurance companies cover the cost of behavioral, occupational, speech and physical therapies our children must have to lead independent lives, but four members of our Republican House Leadership refused to consider a bill known as Nick’s Law.
Nick’s Law passed through our Senate in a bipartisan manner four separate times, but was not given the opportunity to be heard in committee or on the floor. One of the members of our Republican House Leadership asked during caucus, “Why help these children? They are only going to end up in an institution anyway.”This is what we are up against in Oklahoma, Governor Palin. These are people from your own party talking this way about children who can’t speak for themselves.If Nick’s Law had made it to the floor, it would have passed. Big insurance money padding the pockets of our Republican House leadership spoke much louder than our 6,500-plus children in Oklahoma who need insurance coverage.
We aren’t asking for a handout. Hard-working Oklahomans just want this disease that affects more children than all pediatric cancers, AIDs and diabetes COMBINED to be covered under private-pay insurance.Actuarial studies for the state of Oklahoma show that the cost for each policyholder would be $1.66/month for single and $4.66/month for family policyholders.
Families living in Oklahoma are currently spending over $5,000 a month out of pocket so their children will not grow up to become wards of the state.I’m sure many, many Alaskans can relate to this growing issue.Please, Governor Palin, listen to us and listen for the lost voices of children who were born healthy and then taken away from us by this heartbreaking disease called autism.
Robyne and Wayne Rohde Edmond, Okla.
CHICAGO (AP) - In Washington state, Reza and Arzu Forough pay more than $1,000 a week for behavior therapy for their 12-year-old autistic son.
In Indiana, Sean and Michele Trivedi get the same type of therapy for their 11-year-old daughter. But they pay $3,000 a year and their health insurance covers the rest.
Two families. Two states. Big difference in out-of-pocket costs.
If autism advocates get their way, more states will follow Indiana's lead by requiring health insurers to cover intensive and costly behavior therapy for autism.
In the past two years, six states - Texas, Pennsylvania, Arizona, Florida, South Carolina, Louisiana - passed laws requiring such coverage, costing in some cases up to $50,000 a year per child.
The powerful advocacy group Autism Speaks has endorsed bills in New Jersey, Virginia and Michigan and is targeting at least 10 more states in 2009, including New York, California and Ohio.
Other states, including Illinois, have similar bills in the works but aren't working directly with Autism Speaks.
"This is the hottest trend in mandates we've seen in a long time," said J.P. Wieske, a lobbyist for an insurance coalition that argues that these state requirements drive up insurance costs for everyone. "It is hard to fight them."
For lawmakers, voting against these measures means voting against parents who are struggling to do the best for their children.
Parents tell moving stories about how behavior therapy works better than anything they've tried. In two states, bills got nicknames like "Steven's Law" and "Ryan's Law," so voting against them was tough.
Arzu Forough of Kirkland, Wash., who is pushing a bill in her state, credits behavior therapy for teaching her son Shayan, at age 3, to make a sound to ask for a drink of water. Now 12, he is learning to converse about his favorite food and music, and to talk about his frustrations rather than throw tantrums.
Trained therapists, using principles of applied behavior analysis (ABA), created a system of rewards to teach Shayan these skills. As a preschooler, he got a piece of cheese when he said "bubba" for water. Now a therapist rewards him with tokens when he responds in conversation. He uses the tokens to "buy" privileges like going for a car ride.
Shayan's improvements are a welcome relief to his mother, who once called for police help with her out-of-control son while she was driving.
"I pulled over to the side of the road," she said. "I had to call the police to drive behind me so I could drive safely home."
The Foroughs have health insurance, but it doesn't cover Shayan's therapy. Although they both work full time, they must live rent-free with her elderly mother to be able to afford his treatment.
Meanwhile, the Trivedi family of the Indianapolis suburb of Carmel, get 25 hours a week of behavior therapy for 11-year-old Ellie. They contribute co-pays and a deductible, totaling about $3,000. Insurance pays the rest, about $47,000 a year.
Michele Trivedi is an autism activist. She fought for years after a vaguely worded 2001 Indiana law required coverage but insurers still refused to pay for ABA. Finally in 2006, she helped convince the state's insurance commissioner to issue a bulletin spelling out what was expected of insurers.
"It's no longer acceptable that blatant discrimination against people with autism occur," Trivedi said.
Autism is a range of disorders that hinder the ability to communicate and interact. Most doctors believe there is no cure. An estimated 1 in 150 American children are diagnosed with it.
Supporters say behavior therapy has decades of research behind it and can save money in the long run by keeping people out of institutions. Researchers agree, but say much remains unknown about which therapy works best for autistic kids, whether long-term gains can be claimed, and whether it works with older children.
Some states require behavior therapy coverage up to age 18 or 21. But the scientific evidence for ABA is strongest for the youngest, ages 2 to 5. Some researchers have reported on individual children with autism who no longer appeared disabled when they reached school age.
The most rigorous studies, though, show mixed results. A study published in 2000 showed that preschoolers who got intensive behavior therapy had greater gains in IQ than children who didn't get the therapy. But there was little difference in the two group's language development or the intensity of behavior problems. And the children most severely affected by autism showed no comparative gain.
Another study in preschoolers, published in 2005, showed little difference between an intensive ABA-based program run by therapists and less-intensive therapy from parents; children in both groups improved.
When it comes to older children, the research is sparse, said Tristram Smith of the University of Rochester Medical Center in New York, who co-authored the 2000 autism study.
"You could make a decent case for the little kids up to 6 or 7 that (insurance mandates) would be appropriate," Smith said. "I think it would be hard to make that case for older kids."
Another autism researcher, Laura Schreibman of the University of California at San Diego, said "fly-by-night" behavior therapists could defraud insurers with ineffective therapy.
"I would like to see insurance cover this kind of intervention because it's documented to be effective," she said. "But insurance companies have every right to monitor whether it's working. If it's been two years and there are no gains, an insurance company should be saying, 'What are we paying for here?'"
The Council for Affordable Health Insurance, the industry lobbying arm, estimates autism mandates increase the cost of insurance by less than 1 percent by themselves, but when combined with other requirements make insurance less affordable.
Susan Pisano, a spokeswoman for America's Health Insurance Plans, said the industry has been wary of laws ordering a specific treatment because when new scientific evidence emerges, the mandate remains frozen. And she questions whether behavior therapy is medical or educational.
The American Academy of Pediatrics includes ABA therapy in its clinical report on autism, but describes it as an "educational intervention."
"There has been an effort to transfer the response to autism from school systems to the health care system," Pisano said.
Nevertheless, some big companies and the U.S. military are providing ABA-based autism therapy as a benefit.
The U.S. military's Tricare health insurance program not only covers up to $2,500 a month for the therapy, but also recently expanded the definition of who can provide it to make it more accessible. And some self-insured companies, including Microsoft and Home Depot, pay for autism behavior therapy.
Friday, October 10, 2008
The State of Oklahoma
OFFICE OF SENATOR JAY PAUL GUMM
Atoka, Bryan, Coal, Johnston & Marshall Counties
October 10, 2008
FOR IMMEDIATE RELEASE
Contact: Senator Jay Paul Gumm
State Capitol: (405) 521-5586
Durant: (580) 924-2221
Mobile: (580) 920-6990
Autism Insurance Named “Top Priority” for Child Advocacy Group
OKLAHOMA CITY – The effort to require health insurance to cover diagnosis and treatment of autism in children received another grassroots boost this week from one of Oklahoma’s most respected child advocacy organizations.
At its legislative fall forum, the Oklahoma Institute for Child Advocacy (OICA) placed the issue at the top of its priorities for the 2009 session of the Oklahoma Legislature. The forum, held on the campus of the University of Central Oklahoma in Edmond, brought together child advocates and lawmakers to discuss a variety of issues important to Oklahoma’s children.
Senator Jay Paul Gumm is the author of “Nick’s Law,” the bill that would have required health insurance to cover diagnosis and treatment of autism. A Democrat from Durant, Gumm participated in a panel discussion on special needs children during the two-day event. OICA, he said, has an unmatched reputation in standing up for children.
“The Oklahoma Institute for Child Advocacy is a strong and effective voice speaking for children who often have no voice,” he said. “They have been on board with ‘Nick’s Law’ since we started this effort. I am honored to stand alongside them and the parents of children with autism as we continue this battle next year.”
“Nick’s Law” – named for Nick Rohde, a 10-year-old Edmond boy with autism – passed the Oklahoma Senate on bipartisan votes on four separate occasions in 2008. Each time, House Republican leaders would not allow the proposal even to be considered by representatives.
“There is a grassroots groundswell of support for this legislation,” Gumm said. “We see it in Oklahoma and we have seen it in other states. Republican legislators and governors in other states have championed bills like ‘Nick’s Law,’ and we had strong support from many Republicans in the Oklahoma Senate.
“In the entire nation, it was only the Republican leadership in the Oklahoma House of Representatives that made the issue partisan.”
Gumm said there is significant support for the bill among rank-and-file members of the House Republican caucus. “We knew there were enough votes to pass the bill if Republican leaders had just given it a fair hearing and allowed their members to vote their conscience,” he said.
Four Republican representatives – Reps. Doug Cox of Grove, David Dank of Oklahoma City, Charlie Joyner of Midwest City, and Scott Martin of Norman – even signed a petition to force a vote on “Nick’s Law” during the 2008 session. Then, after a House Republican meeting, no other GOP lawmakers would sign despite many having expressed support for the bill.
House leaders recently conducted a legislative study on autism and the state services provided to families struggling with the bio-neurological condition. Parents of autistic children who attended the study meetings expressed frustration that the private insurance component was hardly discussed.
“House leaders chose to ignore the ‘elephant in the room,’ and that is the role insurance must play in the battle against the epidemic of autism,” Gumm said. “They have desperately tried to make a case against ‘Nick’s Law,’ and despite all their efforts, the bill still came out as the top priority of the most respected child advocacy organization in the state.
“Oklahomans are very good at seeing through smoke screens.”
Gumm said a new version of “Nick’s Law” is already written and will be introduced “at the first possible moment” for consideration during the 2009 session. He said he is becoming more hopeful every day the bill will pass next year.
“Parents of children with autism know what it takes to overcome challenges,” he said. “The legislative obstacles put in their path by a handful of powerful legislators is nothing compared to what they have already overcome in caring for their children.
“When you get to know these parents, you understand far more about ‘family values’ than you can ever learn from the empty rhetoric of politicians who either cannot or will not stand for those who have no voice.”
By John A. Small
Johnston County Capital-Democrat
"IF I WERE HIM I'D REALLY BE TICKED"
You know, you really can’t blame our state Senator, Jay Paul Gumm (D-Durant), for taking umbrage over last week’s announcement by some of his Republican colleagues concerning their plans to conduct interim studies focusing on the issue of autism in Oklahoma.
Here’s a man who, for the better part of the most recent legislative session, carried that particular banner higher than anyone at the State Capitol, only to have the rug yanked out from under his feet by House Republicans who apparently couldn’t find it in their hearts to give the issue the fair hearing it deserved. And only now do some of those same House Republicans step up to the plate, albeit in a manner clearly designed to make themselves look like the good guys.
For the one or two of you who may not have heard about any of this, Gumm was the principal author of Senate Bill 1537 – better known as “Nick’s Law,” so named in honor of 10-year-old Nick Rohde, an autistic child from Edmond. This proposed legislation would have required health insurance to cover diagnosis and treatment of autism.
The bio-neurological disorder occurs in one in 150 births and affects up to 1.5 million Americans. The cost of life-long care can be reduced by two-thirds with early diagnosis and intervention; in a decade the annual national care costs will reportedly be somewhere around the $200 billion mark.
As I understand it, 18 other states in this country have already passed legislation similar to Nick’s Law. And it’s obvious from the number of articles and television reports I’ve seen in the national media over the past year or two that the issue has grown into one of major concern nationwide.
Nick’s Law passed the Oklahoma Senate on a bipartisan vote on March 10. But in spite of the hard work of Senator Gumm, the pleas from parents of autistic children and a fair amount of editorial support from newspapers across the state, the measure was killed by House Republican leadership; efforts to resurrect the proposal as an amendment to another bill later in the session fared no better.
Opponents repeatedly cited fears that such a mandate would increase insurance costs and drive up the number of uninsured Oklahomans. The release of a 10-page study by a nationally recognized expert demonstrated that such fears were unfounded, but this did not dissuade House Republicans in their efforts to kill the measure.
A subsequent press release issued by the Oklahoma Council of Public Affairs (OCPA) – which, from what I’ve seen, tends to be against anything that would benefit the majority of Oklahomans – seemingly betrayed the true intentions of the most vocal opponent to Gumm’s measure. That article, essentially a “puff piece” profile of Rep. Ron Peterson (R-Broken Arrow), praised Peterson’s opposition to the bill as a defense of free enterprise; to me that seems a little like saying that the skyrocketing price of gas is a good thing because it stimulates the personal economies of the fatcat oil company executives.
Anyway, the 2008 session ended without Nick’s law getting the hearing it deserved in the House. To his credit, Gumm has vowed to continue the fight; the news earlier this month that Peterson isn’t seeking re-election will hopefully prove beneficial in that regard.
That said, last week’s news of the Republican-sponsored interim studies seems little more than a slap in the face to those families who stand to benefit – who deserve to benefit – from the legislation Gumm proposed.
It’s unlikely that these studies are going to provide any new information that hasn’t already been covered during Gumm’s effort to pass Nick’s Law. And the GOP’s sudden interest in the issue at this point is little more than a poorly disguised attempt at political posturing, thereby adding insult to the injury already suffered by those families.
The House Republican leadership ought to be ashamed of itself.
(Copyright © 2008, by John A. Small)
Monday, October 6, 2008
October 2, 2008 October 06, 2008 12:17 pm—
Copyright © 1999-2008 cnhi, inc
Saturday, October 4, 2008
Studying complex problem
Point of view Autism
By State Rep. Kris SteelePublished: October 5, 2008An area of interest for the Legislature this interim is the issue of autism. In an effort to streamline the process and establish a systematic approach, several legislators coordinated an in-depth study to identify, evaluate and discover more about the disorder.
State Reps. David Dank, George Faught, Joe Dorman, Wallace Collins, Mike Brown, Gus Blackwell and I joined forces to obtain information from parents of children with autism, medical experts, state agencies, and advocate organizations such as the Oklahoma Autism Alliance and the Autism Society of Central Oklahoma to better understand what services are currently available to families facing autism.
In addition, Dana Webb of the Oklahoma State and Education Employees Group Insurance Board and Ann Trudgeon of the Oklahoma Developmental Disabilities Council presented information on what Oklahoma and other states are doing in relation to autism services, including insurance coverage.
Several key findings emerged throughout the course of the study. For instance, appropriate diagnosis and early intervention are extremely important to achieving improved outcomes for children with autism. A comprehensive treatment plan should include speech therapy, occupational therapy, behavioral treatment and parental training.
We also learned there is a need to develop a statewide network of service providers. A recent pilot program conducted by the Developmental Disabilities Services Division of the Department of Human Services provided 30 families $12,000 per year to obtain autism-related services. Unfortunately, much of that money remained unspent due to a lack of treatment providers.
An autism training program for behavior therapists at the University of Central Oklahoma coupled with cost-effective treatment programs could possibly be replicated at institutions of higher learning throughout the state to fill that provider gap. Oklahoma should also consider the possibility of state licensure and credentialing for certified behavior therapists. Research also is a significant piece of the puzzle.
Keith and Joni Geary, parents of a child with autism and founders of Aaron’s Bridge, are committed to developing a state-of-the-art biomedical research center for autism in Oklahoma through the private sector. Incentives for teacher training and physician education should also be implemented into a master plan. Successful programs such as the Oklahoma Teacher Registry Project that equips educators to identify and effectively teach students with autism should be expanded to include more participants.
Individuals with autism and their families face very real and significant challenges. The good news is Oklahoma has a solid foundation to build upon in our efforts to aid those families.
The goal of the Legislature should be to develop policies that lead to effective assistance and support for all families of children with autism.
Components of a comprehensive solution should include appropriate diagnosis, early intervention, effective treatment, sufficient service providers and valid research. Although study on this issue is ongoing, I believe a proposal can be developed that coordinates services and maximizes the benefit to all Oklahoma families challenged by this unique and complex condition.
Steele, R-Shawnee, is chairman of the House Health Subcommittee.
Thursday, October 2, 2008
By Rep. Ed Cannaday
October 02, 2008 04:56 pm
— As we go into the fifth month of the legislative interim, last month was busy with interim studies at the Capitol. One such study conducted by the Economic Development and Financial Services Committee was on the question of how well our educational system is providing for the work force needs of the state.
It was clearly demonstrated that as a result of our state’s educational system being driven by No Child Left Behind and our own ACE Initiative, we are failing to provide workers for our numerous areas of state’s economic activities. This is caused by the mind-set that “Higher Education is for every student” and our graduation requirements, which are tied to high-stakes testing, is driven by this assumption.
Hopefully this study will result in legislation that will bring reality back into consideration of our educational objectives.
This committee also conducted another series of studies on autism and the need to consider mandates for insurance coverage for those with this disability.
Autism impacts families and schools as a result of the lack of early therapeutic intervention, leaving the schools with students who must be served but are not able to function in a regular classroom. We saw in this study that there is such a wide range of disability under this classification that schools can often be harmed with the monetary demands of services for these students.
The cost was demonstrated to exceed over $100,000 a year in some severe cases. It was shown that 85 percent of families with an autistic child will result in divorce. In the last session we tried to place this disability under an insurance mandate, but the Republican leadership of the House Economic and Development Committee thumbed their noses at the parents’ and children’s needs so as to please their insurance company coaches.
Maybe we have learned a valuable lesson as a result of letting the committee finally hear evidence about this matter. However, in our second study the committee still failed to come to grips with the insurance needs of families with autistic children.
Hopefully, we will address this when our 52nd Session begins in February.
E-mail District 15 state Rep. Ed Cannaday, D-Porum, by Clicking Here
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