Saturday, April 24, 2010

A time to highlight accomplishments of those dealing and living with autism

Kim Dabney
Special to the Progress
April 24, 2010

CLAREMORE — What do labels such as “American Indian,” “Jewish,” “Jehovah’s Witness,” “disabled” and “Polish” have in common? They describe wonderful groups of people denoting their faith, culture, condition or heritage. These labels also subjected millions to persecution and death.

For the past 30 years, the United States recognizes April as National Autism Awareness month.

A time to highlight the accomplishments made in healing, dealing, and living with autism.

As the headlines roll in this month it appears we are slipping back to fear of the label and the denial of common rights or dignity to those who must bear it.

Recently, in Oklahoma City, a hospital refused admission to Stephen Puckett, a 28 year-old with autism suffering severe seizures. The reason; he is an adult with autism.

These same hospitals take drug addicts, murderers, rapists, mentally ill, black, white, Hispanic, male and female but not autistic adults.

As a parent of an autistic child the message that several hospitals state as ‘policy’ chills me to the bone. Our son Drew has autism and is only eight years away from reaching the legal age of adulthood. How will this ‘policy’ affect him and others like him?

Drew regressed into autism at age 16 months, leaving him in “label limbo” with pediatricians who shrug their shoulders about how to help him and education systems that do not want to teach him.

Health insurance companies that my husband and I paid premiums into for years do not cover Drew’s health and well-being if it is in connection to his autism. Life insurance companies will not write a child rider for him. There is no escaping the label. These acts of exclusion happen almost everywhere.

There are a few standout exceptions: notably, Roosa Elementary school in Claremore.

The teachers, therapists and staff do not measure Drew by his autism label. They see him as a smart, loving little boy who likes to swing, play with rocks and mud, go to the zoo and do math.

His teachers and therapists marvel at how well he is doing. They push him hard to learn how to read, write and count.

They think he has a future and is worthy of an education. They are doing something remarkable in that they have refused to judge him by the label. They see a growing little boy who wants to learn, have friends and play like other children.

What is equally significant are the other children at Roosa, the typically developing ‘normal’ children, his peer group. These children accept Drew, no qualms or hesitations. They quickly learn how to communicate with Drew, who is non-verbal.

They play with Drew and he loves it. Drew’s autism label does not get in the way. What resourceful adults these Roosa Elementary children will turn out to be.

They will be able to work with all type of people, never seeing the differences as the person, but the person behind it all. They will be first-rate communicators, good neighbors, incredible in the work force, already able to get along regardless of the disparity of a less than desired label.

Perhaps that explains what happened to Stephen. His label of autism met up with folks in authority who do not ‘do’ autism.

Possibly, if they had grown up with children in their classroom and playgrounds and learned to see the person, not the label, Stephen would have received care for his seizure and compassion that his autism makes it harder on him to understand what is going on.

Maybe the “universal government health care” that our elected officials are forcing its way to reality will put an end to situations like those that Stephen went through.

Maybe not. England is a civilized country similar to America that has had ‘free health care” since 1948. Does their system treat the person or the label?

A short while ago in England, Mr. and Mrs. Roberts’ 20 year old son, Harry Horne Roberts, was living in a group home.

Harry had autism. His devoted and caring parents took care of him at home until he was an adult. At age 18, they had safety concerns for Harry and moved him to an assisted living facility where they visited him four or five days a week.

A serious medical decision, made without Mr. or Mrs. Roberts’ knowledge or consent, to put the young man on the drug Chlorpromazine ended Harry’s life.

This dangerous anti-psychotic drug can cause brain damage, sudden death, heart failure and is not a proven or approved treatment for autism. Harry died in his sleep this past December. He was very healthy, active but not psychotic. He was simply autistic.

As a parent of a child with autism, Harry’s suspicious death and Stephen’s denial of medical care present horrifying questions. What is going to happen to my child when he is no longer legally a minor?

Parents of children with any disability that continues to affect them as they mature to adults are faced with the gruesome reality that care for their adult children may be denied or taken over by the state. After years of sacrifice, love, devotion, care, and advocating, we may have our adult child deemed unworthy of medical care or even worse, legally killed with ghastly chemical cocktails prescribed by the state.

Autism Awareness month is almost over and the label of autism is still misunderstood. If you know someone with autism or who has an autistic child, take a moment to see the real person. They may have some quirky characteristics. Do not let that distract you from seeing the real live human being that longs to be in your eyes, more than a lousy label.

n Kim Dabney is the parent of a son with autism.

click here to read the article.

Autism law draws advocates' praise

Previously, insurers could deny coverage for unrelated treatments.

By SUSAN HYLTON World Staff Writer

Advocates for children with autism say that a bill signed into law Friday by Gov. Brad Henry is a good first step toward parity in health coverage for the disorder.

The legislation, added to Senate Bill 2045, requires health insurers to cover the same illnesses for autistic children as they do for children without the condition. The law came about after parents reported that medical coverage was denied for services having nothing to do with autism, such as playground injuries.

"This is a bill to stop any restrictions or discrimination against individuals with autism from medical or surgical procedures that are currently covered," said Wayne Rohde, whose 12-year-old son Nick was diagnosed with severe regressive autism when he was 4.

"The insurance companies needed to stop this discrimination. The leadership of both parties decided it wasn't right."

Rohde said insurance companies were limiting coverage for occupational and speech therapy for autistic children but not imposing those limitations for children without autism seeking the same treatment.

In one case, an autistic child was denied coverage for asthma treatments while an asthmatic child without autism was covered, Rohde said.

Christina Newendorp, development director at the Autism Center of Tulsa, who has two sons with autism, said parents had to decide whether they really wanted a diagnosis that could be used as a reason to reject medical claims.

Newendorp said the law won't require all insurance companies to cover the most effective treatments for autism, known as applied behavioral analysis, which can cost $2,000 to $4,000 a month.

That coverage was part of the 2009 failed legislation known as Nick's Law, named for Rohde's son.

"It doesn't address the larger issue of insurers out there who don't cover (autism) as a medical condition whatsoever," she said. "There's no logical reason for insurance companies not to consider autism a medical disorder. We're surrounded by states taking action on this issue. Oklahoma is dragging its feet."

With an estimated 1 in 150 children being diagnosed with an autism spectrum disorder, there could be a tidal wave of disabled adults in the future if nothing is done, Newendorp said.

"If we take action now, we can help turn these children's lives around so they can become independent adults," she said.

Rohde said that, with treatment, Nick moved from a severe form of autism to the middle of the spectrum.

He is still nonverbal, but he now recognizes words, feeds and dresses himself and is not completely dependent on others for his care.

He also plays with his twin brother, Austin, who does not have autism, his father said.

"Austin is very proud and introduces him to the neighborhood kids," Rohde said. "Austin knows how to communicate with him."

Click here to read the article.

Bills passed to improve the quality of life for children

An excerpt from the Durant Daily Democrat

Click here to read the entire article.

....The second step forward for children last week was enactment of a bill I amended when it was before the Senate. For years, I have fought to require health insurance to cover the diagnosis and treatment of autism. That bill, known as “Nick’s Law,” has passed the Senate a number of times only to falter in the House of Representatives.

During my time with parents of children with autism, they raised another issue. Some insurers routinely deny claims for children with autism when they pay claims for the same illnesses or injuries suffered by kids who do not have autism.

For parents of children with autism who pay health insurance premiums knowing the insurance will not cover autism, denial of claims not related to autism is like a punch in the gut. The families are paying for this coverage, and they are being denied for no good reason.

The effort to right this wrong began as a stand-alone bill I filed at the beginning of session. While working to get the bill heard in committee, time ran out. After very productive discussions, we struck a bipartisan agreement to move my proposal forward. I amended a bill on the Senate floor to include my original language.

Senators unanimously approved my amendment to Senate Bill 2045, and the bill passed the Legislature without a single “no” vote. It arrived on Governor Henry’s desk last week, and he signed it into law Friday.

While not everything we want to see on the issue of autism, this was a huge step in the right direction. This was such a bipartisan victory for families, the editorial page of one of the state’s largest newspapers wrote: “Passage of Senate Bill 2045 represents one of the Oklahoma Legislature’s finest hours.”

For me, I am thankful Oklahoma is a better state today for our children. And, I am forever grateful to the people of Senate District 6 for allowing me to be a part of the effort to make it so.

Thanks for reading this week’s “Senate Minute.” Have a great week, and may God bless you all.

Tuesday, April 20, 2010

Kansas - Gov Parkinson signs autism insurance bill S. Sub for HB 2160 into law

On Monday, April 19, 2010 Kansas Governor Mark Parkinson signed the Senate Substitute for HB 2160: An act concerning insurance; providing coverage for autism spectrum disorder; amending K.S.A. 2009 Supp. 75-6501 and repealing the existing section into law. The bill takes effect upon publication in the Kansas Statute Book. S.Sub HB 2160 passed in the legislature on April 2, 2010 March 30, 2010.

New law and amendment of existing law will require the Kansas State Employees Health Care Commission (administers the State health care benefits program for state employees and other qualified entities) to provide for the coverage of services for the diagnosis and treatment of autism spectrum disorder (ASD) in any covered individual whose age is less than 19 years. Coverage would be no greater than $36,000/year for children from birth to 7, and no greater than $27,000/year for those age 7 through 18, with certain conditions applying to prescription, and services as recognized in the peer reviewed literature as providing a medical benefit.

Applied behavior analysis must be included if prescribed by a licensed physician, licensed psychologist or licensed specialist clinical social worker.

Reimbursement would be allowed only for services by
a provider licensed, trained , and qualified to provide such services or
by an autism specialist [includes BCBAs with experience and other state conditions]
or an intensive individual service provider, [individuals who work under the direction of an autism specialist]

as such terms are defined by the department of social and rehabilitation services Kansas autism waiver as it exists on July 1, 2010. [See Kansas Early Autism Services for more information on the Kansas autism waiver.]
The bill also would require the Health Care Commission, pursuant to the requirements of the Insurance Code regarding mandated health insurance benefits, to submit on or before March 1, 2012, a report to the Senate President and the Speaker of the House of Representatives. The report is to include information pertaining to the mandated ASD benefit coverage provided during the 2011 Plan Year. The information
is to include:

The impact that the mandated coverage has had on the State health care benefits program;
Data on the utilization of coverage for autism spectrum disorder by covered individuals and the cost of providing such coverage; and,
A recommendation on whether such mandated coverage should continue for the State health care benefits program.
The Legislature is permitted to consider (in the next session following the receipt of the report) whether or not to require the coverage for autism spectrum disorder to be included in any individual or group health insurance policy, medical service plan, HMO, or other contract which provides for accident and health services and which is delivered, issued for delivery, amended, or renewed on or after July 1, 2013.

Missouri Compromise autism-insurance bill gets OK in Senate committee

JEFFERSON CITY | A Missouri Senate committee on Tuesday split the difference between House and Senate versions of legislation mandating insurance coverage for children with autism.

The new compromise requires state-regulated health insurers -- about 40 percent of the market -- to cover autism spectrum disorders, including providing expensive behavioral treatment.

It caps annual spending on that treatment at $45,000, midway between the $36,000 and $55,000 caps found in versions of the measure passed by the House and Senate, respectively. It also provides coverage through age 18.

The committee unanimously approved the bill, moving it to the Senate floor for debate.

The bill has been identified as a top priority for House and Senate leadership, as well as Gov. Jay Nixon. After some early momentum, however, its progress has slowed lately. Tuesday's vote was the first action on the issue in over a month.

The Senate's initial version of the bill is in the House and ready for consideration by a committee, although that committee's chairman said today he wasn't sure when it would be heard.

The session ends May 14

Autism insurance bill goes to governor

OKLAHOMA CITY (AP) — Gov. Brad Henry's desk is the next stop for legislation requiring health insurers to cover the same illnesses for autistic children as they do children without the condition.

Sen. Jay Paul Gumm of Durant said Tuesday the measure was passed by the House and Senate and now goes to the governor to be signed into law.

Gumm says families have told him some insurers deny claims for autistic children for illnesses unrelated to the diagnosis. Oklahoma does not require health insurers to cover autism and most insurers exclude it.

Gumm says families with autistic children pay premiums to health insurers and expect to be treated fairly. He says that if an autistic child breaks an arm, they should be covered like anybody else.

Measure Providing Insurance Fairness for Children with Autism Goes to Governor

OKLAHOMA CITY – A bipartisan effort has put a bill on Governor Henry’s desk to make certain health insurance companies cover the same illnesses for children with autism as they do children without such a diagnosis.

That assurance is contained in Senate Bill 2045. When the bill was before the Senate, Senator Jay Paul Gumm proposed the language as an amendment, which senators overwhelmingly approved. The amended bill passed both the Senate and House of Representatives and is now on its way to the governor.

“During my work with families who have children with autism, this was one of their highest priorities,” said Gumm, a Democrat from Durant. “We have families who have children with autism who pay their premiums and expect to be treated fairly. This amended bill will ensure that very thing.”

The senator said dozens of families told him some insurance companies routinely deny claims filed on behalf of children with autism for illnesses and maladies unrelated to the diagnosis of autism. Such claims were denied because Oklahoma does not require health insurance policies to cover diagnosis and treatment of autism and most insurers specifically exclude autism.

“For me,” Gumm said, “this issue speaks to the fundamental moral question of ‘fairness.’ Regardless of anyone’s stand on whether insurers should be required to cover diagnosis and treatment of autism, one fundamental fact remains: If a child with autism breaks an arm on the playground or gets sick, they should be covered the same as any other child.”

Gumm, a Democrat from Durant, said his measure began as a stand-alone bill. After discussing the issue with Sen. Bill Brown, R-Broken Arrow, and chair of the Senate Committee on Retirement and Insurance, a bipartisan agreement was struck to include the language in one of Brown’s bills.

“I want to express my deep appreciation to both Senator Brown and Senate President Pro Tempore Glenn Coffee,” Gumm said. “Their support has made it possible to get this legislation through both chambers and to the governor. Families across Oklahoma will benefit because we worked together.

“It shows that we can set aside partisan differences and find that common ground on which we can build a better Oklahoma for all our citizens, and this was a critical step toward fairness for our children and families who are struggling with autism.”