Lawmakers Review Autism Programs

Oklahoma House of Representatives

Media Division

September 25, 2008

FOR IMMEDIATE RELEASE:

Contact: State Rep. Kris Steele

Capitol: (405) 557-7345

Lawmakers Review Autism Programs

OKLAHOMA CITY – State lawmakers continued a legislative study of autism services today, reviewing several existing programs and considering proposals for new or expanded services.

“It’s clear that the families of children with autism face significant challenges,” said state Rep. Kris Steele, a Shawnee Republican who requested the study. “Our challenge is to determine the appropriate role state government should play in advancing policy that helps all families of children with autism.”

Thursday’s meeting showed existing services are in place benefiting children with autism and their families. The Legislature may consider proposals to expand these services next session.

Lawmakers also learned about the services public schools can provide to children with autism.

Nancy Goosen, director of special services for Edmond Public Schools, noted that federal law requires all public schools to offer services for children with autism just as they do for other special education pupils. Those services for children with autism may include occupational and physical therapies.

In Edmond , specialized services are designed for individuals with autism from preschool to 21 years of age and include treatments such as speech therapy, physical therapy and occupational therapy. The school district has 31 speech language pathologists with three of those specialists assigned to the building housing the communication disorder program for children with autism who have concomitant disabilities or intellectual disabilities at the elementary level. .

Edmond also has teaching assistants who work individually with the children, providing some forms of Applied Behavioral Analysis and other treatments.

The school also contracts with a consultant who assists teachers with therapy.

School specialists will literally go into the home and provide support if necessary to help parents of children with autism.

Lawmakers were also made aware of new initiatives that could benefit many Oklahoma families of children with autism.

Keith and Joni Geary, founders of Aaron’s Bridge, shared their plans to expand biomedical services in Oklahoma .

After their son Aaron was diagnosed with autism as a two-year old, the Gearys took him to Thoughtful House in Texas , which specializes in biomedical treatments.

Biomedical treatments attempt to resolve the physical problems common to children with autism, such as stomach ailments and ulcers. By reducing those physical problems through specialized diets and similar treatments, children are better able to respond to behavioral therapy because they are not distracted by physical pain.

Because biomedical treatments address physical ailments and not autism-specific treatments, biomedical therapies are often covered by existing insurance policies.

However, the Gearys noted that few doctors are trained to provide those therapies to children with autism.

They have established Aaron’s Bridge to raise private funds to identify autism and provide biomedical treatment in Oklahoma . The Gearys proposed establishing a partnership with physicians’ schools in Oklahoma to allow medical students to train at the Geary’s planned clinic.

They suggested state research grants and tax incentives could also play a role in increasing the number of trained providers in Oklahoma .

In addition, lawmakers heard from officials at the Shawnee-based National Institute on Developmental Delays, where Fr. Paul Zahler has developed a cost-effective program that provides behavioral therapy and other treatments through everyday activities.

The program has served approximately 5,000 children with developmental delays, including autism, since its founding.

Qualified children receiving state assistance of $25 per day are able to afford the NIDD program.

Officials hope to replicate similar services in other parts of the state so more children and parents can receive services and training related to autism.

Steele said Thursday’s presentation may lead to legislative proposals in 2008.

“I am very excited to learn more about what the state and private sources are doing to benefit children with autism,” Steele said. “We need to make sure that parents are able to access these resources and there may be a need for expansion. I am pleased to learn we have a solid foundation in place to build upon.”

Parents seek autism mandate OETA

OKLAHOMA CITY (AP) - The parents of autistic children are asking state lawmakers to require health insurers to pay for the diagnosis and treatment of the developmental disorder.

Parents appeared before the House Economic Development and Financial Services Committee Thursday as lawmakers opened hearings into the nature of autism and the availability of treatment options in Oklahoma.

Wayne Rohde, father of a 10-year-old autistic child, says he hopes the hearings will lead to legislation to mandate autism coverage by health insurers. Similar mandates have been passed in 18 other states.

Legislation known as Nick's Law, named for Rohde's son, was passed by the Senate last spring. But the House refused to hear it after opponents claimed the mandate would drive up the cost of health insurance and make it unaffordable.

Parents push for autism study to create law

Click here to watch video.

By Amy Lester, News9
OKLAHOMA CITY -- One in 150 children in the U.S. is diagnosed with autism. Parents in Oklahoma have said time and time again they need more services for their kids and help paying for them. That's why one state lawmaker is taking a closer look at the issue.
An interim study on autism took place Thursday at the State Capitol.
This is the first of several studies prompted by the failure of Nick's Law last session. Lawmakers want to know what families with autistic kids need and the families came to tell them.
In front of lawmakers Wayne Rohde discussed autism.
"We spend, currently, nearly $5,000 a month on services for Nicholas," Rohde said.
His son Nick has autism. Last session, Rohde and so many parents worked tirelessly to pass Nick's Law, which would've forced insurance companies to cover autism treatments. The bill died, but the families are still fighting.
"The intervention is going to be much more effective the earlier we can get to them," Lara Mattox with Tulsa Developmental Pediatrics said.
This interim study on autism gives families hope, that this session will be different.
"I wanted the representatives to know who they're talking about and who this effects," Laurie Mitchell, granddaughter has autism, said.
Representative Kris Steele is heading up the comprehensive autism study. He is looking at what services the state has, what's not available and how to address a shortage in treatment providers.
"We wouldn't be spending this much time and this much energy and putting forth this much effort if we didn't plan to truly address this issue in good faith and a whole-hearted effort," Rep. Kris Steele (R) District 26 said.
The families, who are begging the state for help, again, this year, don't want their pleas to fall on deaf ears.
"I respect each and every one of them for taking the time to hear us out and I'm hoping they'll learn enough from these studies to change their minds and help us get it passed," Mitchell said.
Senator Gumm, author of Nick's Law, said he'll author the same bill this session, trying to get it passed.
Steele will hold another study session next week.

Parents seek autism insurance mandate

The Journal Record
Sept. 19, 2008

OKLAHOMA CITY – Wayne Rohde and his wife spend $5,000 per month on treatment and therapy for their son Nick. They spend another $1,000 per month in premiums for a health insurance policy that does not – and will not – cover the bulk of their medical expenses. Nick has autism, and his treatments are not covered under the family’s health care policy.

It doesn’t take a mathematician to figure out why the family has considered dropping their insurance coverage, said Rohde. Money is tight, and the policy does not cover the one item they need coverage for the most.

But Rohde believes the private market, not socialized medicine, is the best way to handle health care in the United States. That’s why he’s working so hard to get the state government to force insurance companies to cover health expenses related to autism. Mandating coverage for autism will not destroy private insurance, he said – it will help preserve it.

“I come from a financial background,” said Rohde. “I worked on the campaign when Ronald Reagan ran for president … I’ve been around enough to know how these things work, and health care is best handled by the private market, not the government. But more and more of these health care costs are being shifted onto the taxpayers.”

When insurance companies fail to pay for medical treatment for autistic children, the parents turn to state services for help. Further, when insurance companies refuse to cover treatments proven to help autistic children grow into productive members of society, those children may instead grow into individuals who have to rely on state services for the rest of their lives.

Rohde is a central figure in a debate that has raged at the state Capitol for more than a year. He and other parents of autistic children are lobbying lawmakers to create a mandate, requiring insurance companies doing business in Oklahoma to cover medical costs related to autism. The state has created insurance coverage mandates in the past, including requirements for ambulance transportation and mammography screening.

Opponents of insurance mandates, who include the state House Economic Development and Financial Services Committee chairman, state Rep. Ron Peterson, R-Broken Arrow, say mandates may lead to the demise of the private insurance market. Requiring insurance companies to cover specific treatments and conditions drives up the cost of insurance for everyone, Peterson has said. Many families can barely afford to pay their insurance premiums, and any additional cost increases will price insurance coverage out of reach for more Oklahomans, leading to an increasing uninsured population.

Jim Nicholson, director of the developmental disabilities division of the Oklahoma Department of Human Services, said the situation does seem to be one of pay now or pay more later. The sooner children with autism are diagnosed and begin treatment, the better the outcomes for that child, with some children even recovering completely. The opposite is also true – children who do not receive treatment have more severe social, mental and physical problems when they grow up.

Dee Blose, mother of an autistic child, said she had heard someone make the comment during the 2008 session that “the cost is too much and the benefit is not worth it, since these kids will need to be institutionalized anyway.”

“That is not true,” said Blose, after introducing the committee to her 19-year-old son, David. Though David has trouble communicating, he spoke a few words at the meeting and will soon be moving out to live in his own house, three doors down from his parents.

Rohde said his son is responding well to the treatments and therapy he receives, and is doing a little better every day. Though Rohde said the sacrifices are well worth it, the situation has taken its toll on the family. Lack of support from their insurance companies on the autism issue is leading to a host of other societal ills.

“We’re bankrupt,” said Rohde. “We’ve used 20 years’ worth of retirement savings, and we have no idea what we’re going to do in 15 years when we’re scheduled to retire. … My marriage is a mess – we’ve done nothing wrong, we’ve just been unable to spend the time on it.” The divorce rate for parents of autistic children is 85 percent, studies show.

Oklahoma parents renew push to get autism help

The Oklahoman
Sept. 19, 2008

Her voice quavering and her eyes welling with tears, Deborah Decker described for state lawmakers Thursday the difficulties her family confronts every day while raising her 5- and 6-year-old autistic children.

"For the last five years, my family has been living in crisis mode,” Decker, president of the Autism Society of Central Oklahoma, said as she and other parents pleaded for the state's help to obtain and pay for therapies for their autistic children.

The parents offered emotional accounts of how they struggle to pay for expensive behavioral and speech therapies not provided by the state or covered by private health insurers.

"We are bankrupt,” said Wayne Rohde, the father of a 10-year-old autistic child. Rohde urged lawmakers to require health insurers to pay for the diagnosis and treatment of the developmental disorder.

Rohde said he spends $5,000 a month for autism therapies and $1,000 a month for a health insurance policy that does not cover autism.

"Without these therapies, we're just pushing sand up a hill,” Rohde said.
The parents' appearance before the House Economic Development and Financial Services Committee renews the politically charged debate over a proposed autism mandate.

Legislation known as Nick's Law, named for Rohde's autistic son, was passed by the state Senate last spring. But Republican House leaders refused to hear it after opponents claimed the mandate would drive up the cost of health insurance and might make it unaffordable for many Oklahomans.

Rep. Kris Steele, R-Shawnee, sought an interim study on the issue and said he hopes it will lead to legislation to address the "very real and significant challenges” facing autistic children and their families.

"At this point, everything is on the table,” Steele said. "We want to learn more about what other states are doing.”

Parents tell of trials of autism

By BARBARA HOBEROCK Tulsa World Capitol Bureau 9/19/2008
Legislators hear how families can go broke or break up.OKLAHOMA CITY — Since Deborah Decker's children were diagnosed with autism, the course of her family's life has changed, she told a legislative panel Thursday. Decker and her husband seldom leave their Oklahoma City home together, she told the House Economic Development and Financial Services Committee, which is conducting an interim study on autism.

Many parents with autistic children divorce, said Decker, president of the Autism Society of Central Oklahoma. Her two children don't play or interact with each other or their peers, she said. One becomes frustrated because he is unable to express himself, while the other hasn't said his first words yet at age 5, Decker said. For the last five years, her family has lived in a crisis mode, she said. "I pray today the government is going to do something to help my family," she said.

Last session, legislation to mandate insurance coverage for the diagnosis and treatment of autism died in the House. It will be reintroduced next session, said Sen. Jay Paul Gumm, D-Durant, the author of the legislation. Wayne Rohde, whose son Nick is autistic, described his Edmond family's struggle to get what they felt were proper services to help Nick. Rohde said his family spends nearly $5,000 a month on services for Nick and pays a little more than $1,000 in insurance premiums, but the insurance doesn't cover autism, he said. He and his wife have wiped out 20 years of retirement savings to pay for their son's care, Rohde said.

Lara Mattox, a psychologist with the Tulsa Developmental Pediatrics and Center for Family Psychology, said early detection and intervention are critical to helping children with autism. Treatments include speech and language therapy, occupational therapy and behavioral therapy, she said. In addition, parents need support and training, she said. Mattox said it is difficult for parents in rural areas to obtain access to the care they need, which is usually available in the metropolitan areas. A "phenomenal" number of children go untreated or undertreated, she said.

http://www.tulsaworld.com/news/article.aspx?articleID=20080919_16_A8_hLegis663063

Nick's Law Education Seminar in Shawnee

Just a reminder that on Monday, Sept 15th, 2008 6pm there will be another in a series of Nick's Law educational seminars for parents, caregivers, and concern citizens in the Shawnee area.

The seminar, conducted at the Shawnee City Library, will be hosted by Wayne Rohde, father of Nicholas, an autistic 10 year old. Local officials and state representatives of that area have been invited to attend.

The seminar is a continuing series of meetings to provide education and to rally the autism community on securing passage of Nick's Law in the upcoming legislation session that starts Feb 2009.

The seminar will move to the greater Tulsa area in the next couple of weeks.

Myths of insurance mandates

By State Sen. Jay Paul Gumm

The Oklahoman, Saturday, Sept 13, 2008

President Kennedy said, "The great enemy of the truth is very often not the lie — deliberate, contrived and dishonest — but the myth, persistent, persuasive and unrealistic. Belief in myths allows the comfort of opinion without the discomfort of thought.”

As we fought for health insurance coverage of children with autism, we fought a "persistent, persuasive and unrealistic” myth. The constant refrain from those who oppose helping these families is their opinion insurance mandates like "Nick's Law” raise premiums and increase the number of people who are uninsured.

The insurance situation in other states unravels the arguments on which the opponents of "Nick's Law” depend. First, compare the number of legislative mandates among several states. Then, in those states with more legislative mandates, one should look at the percentage of uninsured. Finally, one should examine premium costs in those states compared with Oklahoma.

We have 36 health insurance mandates in Oklahoma; 20 states have fewer and 29 states have more. For their myth to be accurate, every state with more health insurance mandates should have higher premium costs and more uninsured. Here is where their myth begins to unravel.

Four states that have more mandates have lower average premiums: Missouri, Tennessee, Virginia and Washington. Also, the percentage of uninsured is smaller than Oklahoma in each of those states.

Oklahoma has almost 19 percent of our residents without health insurance. In Missouri, the rate of uninsured is 12.3 percent; in Washington, 12.5 percent; in Virginia, 13.2 percent of its residents are uninsured; and, in Tennessee, the number is 13.4 percent.

The number of uninsured in individual states has more to do with per capita personal income and the cost of living than legislative requirements that health insurance cover specific illnesses. Even that statement has exceptions.

In California, one of the most expensive states in which to live, health insurance is cheaper than in Oklahoma. On top of that, California has 14 more legislative health insurance mandates than Oklahoma does.

This myth has only one purpose: Allow some to turn their backs on autistic children "without the discomfort of thought.” During the 2008 session of the Legislature, the myth allowed a small number of Republican leaders in the House of Representatives to deny a hearing on "Nick's Law” without the discomfort of a real debate.

The reason is twofold. First, they know their argument will never hold up under real scrutiny, so they put up this smokescreen to provide political cover. Second, they know a majority of House members — Republicans and Democrats alike — will vote to pass "Nick's Law” if given a chance, just like what happened in the evenly divided Oklahoma Senate.

The real tragedy of House leaders' stall tactics is the continued unimaginable financial strain on families with autistic children. "Nick's Law” will help, if House leaders will only give the measure a hearing. This is a chance for them to do more than talk about "family values.” It is a chance for them to truly value families.

Gumm, D-Durant, represents District 6 in the Oklahoma Senate.