Angle and Autism: Parents Speak

From KTNV:

KRNV reports:

Parents of children with autism are fighting mad at comments made by Senate candidate Sharron Angle. The parents met at a round table discussion called by Assem. David Bobzien, (D) District 24, Wednesday morning in Reno.

Bobzien was among numerous state lawmakers who sponsored Assembly Bill 162 at last year's session, which provides for insurance coverage for expensive-- but effective-- autism treatments.

...

"I am outraged by Sharron Angle and the comments she has made," said Herah Osborne, whose 7-year-old twins have been diagnosed with autism. "[And] the fact that she didn't educate herself about Assembly Bill 162."

Several parents who attended the meeting took a copy of the 2008 report on autism, compiled by the Autism Coalition of Nevada, to Angle's Reno office. By Wednesday afternoon, Angle's office had released a statement that said in part:

"Sharron Angle believes that Americans deserve the best medical coverage and treatment, and the real issue continues to be about costly unfunded government mandates forced upon Americans by career politicians like Senator Harry Reid through unwanted legislation like Obamacare which will reduce the level of needed care while driving up the cost of health insurance."

Angle Under Fire on Autism

Greg Sargent writes at The Washington Post:

* I wrote earlier that Sharron Angle wasn't mocking autism in that vid that's making the rounds, but Nevada writer Steve Sebelius makes a strong case that she was, in fact, expressing "skepticism that autism is a legitimate disorder."

Sebelius argues the vid reveals "Angle's utter selfishness, and her encouraging that selfishness in others. She doesn't have autism, or autistic kids, so why should she pay for them? And why should you? She's not going to have any more babies, so why should she be forced to pay for other people's? And why should you?"

* And: Eric Kleefeld points out that "it is very clear that Angle was opposing mandated health insurance coverage for various conditions, including autism." Meaning that Angle's plan wouldn't require insurance companies to cover it.

* Angle's response: Her camp puts out a statement that government allows people to "falsely label other symptoms as autism."

Sargent also writes on an attack from HHS Secretary Sebelius:

It isn't every day that a White House cabinet secretary thrusts herself this forcefully into a Senate race, but Health and Human Services secretary Kathleen Sebelius today took a very hard shot at Sharron Angle over that widely-circulated video of Angle belittling mandated coverage for autism treatment.

"It is my understanding that Sharron Angle believes that there is a hoax, under the guise of autism, where you would include requests for treatments that may not even be required," said Sebelius, who was in Nevada promoting health care reform with Harry Reid.

Sebelius pounded Angle's comments as "insulting" to parents and kids, adding: "I don't know if there is anyplace in the country where the differences in the candidates are more stark than here."

The Reno Gazette-Journal reports:

Russ Steele, a parent whose 5-year-old son suffers from autism, said Angle "owes an apology" to parents and their children with autism.

"When she mocked the very existence of autism, she crossed the line," Steele said.

"Sharron Angle owes (my son) Brandon and every other autistic child in Nevada an apology, not only for trying to undermine their insurance coverage but for mocking the very existence of autism," Steele said.

Whooping Cough: WaPo Notices

The Washington Post takes note of the whooping cough outbreak in California:

In California it is legal and quite easy to refuse vaccination, and the discredited theory that vaccines cause autism has created clusters of unvaccinated children. In affluent Marin County north of San Francisco, for example, about 13 percent of parents refused vaccination for their kindergartners in 2009, according to the state's Department of Public Health. Marin has one of the highest rates of infection this year.

Pertussis is more infectious than smallpox, polio or influenza, and it spreads quickly through the unprotected. It often escalates from what seems to be a regular cold into a severe respiratory infection that causes some patients to gasp for air with a distinctive high-pitched whooping sound.

But while shunning vaccine is probably playing a role in the epidemic, particularly in some areas of the state, it isn't the only cause, according to Kathleen Harriman, California's chief epidemiologist for vaccine-preventable diseases. Better detection explains some of the increased reports of pertussis. But Harriman and other experts worry that the epidemic could also point to serious problems with the current vaccines.

Life with Autism

Chicago's WLS reports on one family's struggle:



The Hartford Courant reports on adults on the spectrum:

Things have improved for younger people diagnosed with an autism spectrum disorder.

Today, federal law requires that children with disabilities receive special education services until they graduate with a diploma or turn 21, said George Dowaliby, a manager in the Bureau of Special Education in the state Department of Education. As part of those services, school districts must also identify and provide transitional services, he said.

"This has to begin by the youngster's 16th birthday and can and often does begin earlier," Dowaliby said. This is "to help prepare the student for post-public school education, employment, post secondary goals," he said.

The gap continues, however, Dowaliby said, noting that once a child who has autism but does not have mental retardation graduates or is older than 21, there is a dropoff of available services.

What the state does offer is the program that Patrick Walsh is part of. Serving about 50 people from the New Haven and Hartford areas, the program provides life skills, job coaching, job development and mentoring.

It does not offer supportive housing for adults with autism, a spokeswoman from the department of developomental services said. And, perhaps more unfortunately, there are no plans to expand it beyond its 50 or so clients.

Those not accepted into the Department of Developmental Services' program can apply for employment help through the Bureau of Rehabilitative Services, an arm of the Department of Social Services. "We look at their skills and abilities, their interests and the challenges that they might face," said Torrey Morse.

Going to work is challenging for people on the autism spectrum, she said. "It's a growing population in Connecticut and across the nation, and as an agency we are trying to learn what we can about this population."

Angle Reactions

KVVU reports:

The national Autistic Self Advocacy Network on Friday called for Nevada GOP Senate candidate Sharron Angle to apologize for a statement she made regarding health care and autism treatment.

Video of Angle speaking at a 2009 Tea Party rally surfaced this week. In it the former state legislator slams Democratic health care policies.

“You’re paying for things that you don’t even need, they just passed the latest one is every, everything they want to throw at us now is covered under autism, so that's a mandate that you have to pay for,” she said, making air quotes around the word “autism.”

The Nevada Democratic Party posted a video of the speech on YouTube.

“We’re concerned by the Angle campaign’s claim that individuals and families 'falsely label other symptoms as autism' in order to takte advantage of insurance mandates,” the ASAN said in a statement. “Lack of insurance coverage for habilitative services, such as occupational therapy and speech pathology services, is a barrier to the civil rights of autistic Americans both young and old.”

Autism Angle Update

KRNV follows up on Sharron Angle's comments on autism (see yesterday's post):

KRNV News 4 asked Sharron Angle's campaign for comment yesterday, and her spokesperson Jerry Stacy sent us the following in an email just before noon today:

"Sharron believes that anyone affected with autism deserves the best medical coverage and treatment, and she speaks out against these expensive government mandates which falsely label other symptoms as autism because it creates this huge cottage industry that drives up health insurance cost while diluting the needed coverage for those patients affected by autism...and nobody is buying Senator Reid's latest despicable attempt of trying to distract voters from his failed record."

Vice-Chair for the Commission on Autism in Nevada Ralph Toddre released this statement today:

"What Ms. Angle claims about AB 162 is false. The bill is very specific that the coverage is for autism spectrum disorders. It does not create a "cottage industry." It covers medically necessary treatment and evidence-based therapy, as well as the screening and diagnosis. It is autism specific. Legislators and advocates made sure of that. Read the bill! You don't condemn a bill that provides for medical coverage and treatment because you think it will become diluted! One in 110 children in this country is affected by autism. That is more than juvenile diabetes, HIV, and childhood cancers combined. All of those are covered by insurance. Why should autism be discriminated against by insurance companies?"

Senate Candidate Antagonizes Autism Community

KRNV in Reno reports:

Democrats are emphasizing Nevada GOP Senate candidate Sharron Angle's opposition to mandating insurance coverage for autism and pregnancy and are using a video of her at a 2009 tea party rally to hammer home their point.

In the video, released by the Nevada Democratic Party, Angle slams a recently passed Nevada mandate for insurance carriers to cover treatment for autism.

"Take off the mandates for coverage in the state of Nevada and all over the United States," Angle said. "But here you know what I'm talking about. You're paying for things you don't even need. They just passed the latest one, is everything that they want to throw at us now is covered under autism," she said, using her fingers to make quotes in the air while she said the word ‘autism.' "So that's a mandate that you have to pay for. How about maternity leave, I'm not going to have any more babies, but I sure get to pay for it on my insurance. So those are the things we want to get rid of."

North Dakota Mandate Legislation

The Grand Forks Herald reports that a proposed insurance mandate in North Dakota has two features in common with proposals elsewhere: it is named for a person with autism, and it has support from legislators with firsthand experience:

A Dickinson, N.D., father wants kids like his 8-year-old son to be able to get the help they need.

Nick Gates is pushing for “Noah’s Law,” which would require health insurance coverage for autism spectrum disorders. The bill draft applies to those under the Public Employees Retirement System.

Gates, who works for the Dickinson Police Department, testified Tuesday before the legislative Employee Benefits Programs Committee..

Sen. Carolyn Nelson, D-Fargo, who has a grandson with autism, said she and Sen. Rich Wardner, R-Dickinson, are supporting the bipartisan legislation.

The bill draft would require insurance companies, nonprofit health service corporations or health maintenance organizations to provide coverage for the diagnosis and treatment of autism spectrum disorders.

Coverage would be limited to treatment prescribed by a physician in accordance with a treatment plan.

The bill also states coverage could not be terminated or refused solely because the individual is diagnosed with an autism spectrum disorder or has received treatment.

Peter Roverud of Minneapolis-based Deloitte Consulting told lawmakers an estimated 85 Public Employees Retirement System members would receive treatment for autism spectrum disorder at a cost to the plan of $25,000 to $35,000.

This would equate to a per member per month cost of $3.08 to $4.31, or about $2.1 million to $3 million annually, he said.

Autism in Shanghai

CNN reports:

Qing Cong Quan Autism Center (QCQ) is one of seven Shanghai schools dedicated to educating autistic children. There are 10,000 autistic children in Shanghai, according to the Autism Children Foundation. Despite the high numbers, few public Shanghai schools in the city accept children with autism.

Like many educators, Chen Jie knew little about autism. In fact, when QCQ opened its doors in 2004, it was a regular preschool. That year, a father approached Chen Jie asking if she would enroll his autistic son. At the time Shanghai had no autism schools, and no one else would admit the child. Chen Jie agreed, and word spread as more and more parents came with their autistic children. It seemed that Chen Jie’s calling had found her. Within a few months, QCQ officially became a Chinese NGO and school for autistic children.

...

Since the Chinese government recognized the disorder in 2006, knowledge about autism has grown, but public awareness continues to be spotty. Chen Jie and her staff focus on educating not only children, but also parents across China and the local community. “We grab every opportunity to tell people what autism is and invite them to come see,” says Chen Jie.

Families of autistic children do still face social stigmas. Often one parent must quit their job to stay home with their child, adding financial pressures. The QCQ staff helps parents deal with the huge learning curve that come from having a special needs child and teaches parents how to help their kids develop.

Chen Jie explains, “We never say the kids lack care, but that they need training.” That is something often lacking outside of QCQ.

See previous posts on autism in China here and here.

HR 5756, the Training and Research for Autism Improvements Nationwide [TRAIN] Act

On Wednesday, the US House votes on the HR 5756, the Training and Research for Autism Improvements Nationwide [TRAIN] Act, by Representatives Mike Doyle (D-PA) and Chris Smith (R-NJ). Doyle and Smith are c0-chairs of the first-ever Congressional Membership Organization dedicated to autism advocacy on Capitol Hill—The Coalition for Autism Research and Education (CARE). When the House Energy & Commerce Committee approved the measure in July, Representative Doyle issued a release with background information:

Congressman Doyle and Congressman Chris Smith (NJ-4) introduced the TRAIN Act on July 15. This national autism training initiative would establish grants to provide individuals with interdisciplinary training, continuing education, technical assistance, and information in order to improve services to children and adults with autism and their families, as well as to address the existing unmet needs related to autism.

The TRAIN Act is supported by groups like Autism Speaks, the Autism Society of America, self advocates from the Autism Self-Advocacy Network, and the Association of University Centers on Disabilities (AUCD) and many other organizations.

The manager’s amendment made several agreed-upon technical changes to the text of H.R. 5756 as introduced, reflecting technical assistance from the Administration for Children and Families at the Department of Health and Human Services. These changes would make certain that University Centers of Excellence on Developmental Disabilities, also known as UCEDs, seeking grant funds under this section demonstrate that families, in addition to individuals on the autism spectrum, will participate in the planning and design of authorized activities – and that UCEDs seeking capacity-building grants to collaborate with minority-serving institutions provide services and conduct research and education. The amendment and the amended bill were both approved by voice vote.

The bill is on the suspension calendar, generally reserved for non-controversial items likely to pass by more than two-thirds.

Insurance in West Virginia

WTRF reports on a hearing last week in West Virginia:

Insurers took their usual position.

Moving for Insurance

CNN reports on a family that moved from West Virginia to Florida for better autism coverage:

Faced with huge financial pressures and not wanting to miss their treatment window, Radcliff and Finn did what many autism parents do: They moved to a state where autism anti-discrimination legislation had been passed. Finn had a job opportunity in Florida, and they jumped on it.

Although the details of the legislation vary by state, all "autism anti-discrimination legislation," as it is called by advocates, compels insurance companies to cover ABA treatment for children with autism.

Twenty-three states have so far passed such legislation, and a controversial version of the bill is due on New York Gov. David Paterson's desk later this month, according to his office.

See state-by-state analysis of anti-discrimination legislation

Jennifer Saunders of the National Conference of State Legislatures says lawmakers have started to sit up and take notice.

"We've definitely seen an increase in the number of bills that have been introduced in the last few years related to autism [insurance mandates], and so I think it's been a growing issue for states -- or at least they've become more aware of it," Saunders says.

In 2010, Iowa, Kansas, Kentucky, Maine, Massachusetts, Missouri, New Hampshire and Vermont enacted legislation requiring insurance coverage for autism, according to NCSL.

Susannah Poe, an associate professor at West Virginia University's School of Medicine and an expert on autism who advises the West Virginia legislature, says a bill is even gaining momentum in her state.

"This is our fourth year working with the state legislature toward this insurance, and this is the first year I feel hopeful that we will see it through. The legislators on the joint judiciary subcommittee are very well-versed about the need and have welcomed our efforts to provide them with critical information," says Poe, who spoke to the committee on Tuesday.

Inland Regional Center

An earlier post described an audit of California's Regional Centers.

The Inland Valley Daily Bulletin (Ontario, CA) reports on a hearing this week at the Inland Regional Center:

Several vendors speaking at the public hearing spoke about retaliation for questioning decisions or raising concerns about operations.

Laura M. Wiles, an advocate for special education and adult services in Wildomar, said "I am continually frustrated by the lack of programs, especially for adults with autism."

The parent of an 18-year-old son with severe autism, Wiles said IRC was unable to place her son in an appropriate facility in Riverside County. She found one for him in San Diego County.

"They (IRC) have dropped the ball on adult programs. The caseworkers know this is something they should advocate. They are overwhelmed."

"The organization is more about quantity than quality," said Beth Burt, president of the Autism Society of America's Inland Empire Chapter in Corona.

After the meeting, Carol Fitzgibbons, IRC executive director since May, said, "It is the responsibility of myself, our staff and our board to listen and take the information and figure out what we need to do next and try to resolve some of these issues."

"I always feel that an audit is a learning process ... this is part of the learning process."

"At the end of the day consumers are being served and we plan to move forward in positive ways," she said.

Assemblyman Hector de la Torre, D-South Gate, who initially called for the audit, said in an interview Tuesday, "clearly there is not enough oversight of the regional centers which manage nearly $4 billion in taxpayer funds."

On Facebook, Kristie Renee' Sepulveda-Burchit follows up:

An article I read yesterday morning was titled "Angry crowd criticizes Inland Regional Center." Now yes there were people who were notably angry and many were understandably vendors. One parent did verbalize he was angry. It was clear from the other things he said that this parent was more frightened, anxious, and that his trust had been violated by IRC. I don't think those are things most men verbalize about and certainly not at a public meeting. This parent I recognized from going to other board meetings throughout the past year and a half and immediately wondered where his wife was as she normally speaks. He pointed that out saying normally his wife got up and did public comment about the recurrent issue they have of the regional center curbing the independence of their son with a developmental disability. However, as this dad announced, his wife had since passed away. He later talked about how he is pushing 60 and won't be around forever and he thought he could trust the regional center to be there for his son after he passes too and now he's just not so sure. Perhaps he is angry. Or perhaps he's really scared. I know I would be.

Due to the budget cuts from last year in 2009 our regional center decided to cut for all consumers' a service called social recreation. This service gives the IRC clients the ability to go out in the community and socialize. They didn't train the case workers or staff on exemptions to the legislative rules just sent out notices to all consumers that social recreation would be cut. One parent got up to talk about the effect of this on her son and she verbalized that he no longer is going out in the community but staying at home. This mom feared that her son was headed in the direction of having to be institutionalized.

Another parent voiced her concern for her adult son who has been ousted from several day programs. Though she recently found a pilot program that is appropriate for him, she believes IRC does not have ample selection and is not prepared for the tsunami of children with autism that will be adults. This parent has had to become a resource to other parents who have children graduating from high school who have nowhere to turn for their kids.