I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu
The state’s independent legal advocate for people with disabilities has sued Columbus City Schools, saying the district is blocking attempts to investigate possible abuse of a student.
The agency is attempting to find out whether the district abused an 18-year-old student with autism in November by placing him in a padded room at school. The student’s mother told the agency that her son lay on the floor, urinated there and later contracted a staph infection, according to the lawsuit.
Teacher aides and others who work with autistic students could receive special training after the state Senate approved a rewritten bill Tuesday.
Sen. Steve Newman, R-Lynchburg, revised a House of Delegates bill proposing to train aides but failing to say how the training would be provided or financed.
But Senate President Jeff Kessler on Tuesday said that the law's spending containment language should allow a Thursday vote.
The pending bill would make clear that the law's benefit caps are meant for applied behavioral analysis. Experts consider ABA treatment crucial for many children diagnosed with autism spectrum disorders.
Insurers want the caps to apply to all autism-related coverage. The Public Employees Insurance Agency estimated Tuesday that the bill would cost it at least $3 million annually.
But the 2011 law also allows insurers to pursue additional savings measures if autism coverage increases annual plan costs by 1% or more. Kessler said that may resolve cost concerns.
Today, the Department of Education announced new steps to help close the achievement gap for students with disabilities by moving away from a one-size-fits-all, compliance-focused approach to a more balanced system that looks at how well students are being educated in addition to continued efforts to protect their rights.
While the Department has effectively ensured access to educational resources for students with disabilities, not enough attention has been paid to educational outcomes, which have not sufficiently improved. This is partly due to the fact that federal policy has focused more on procedural requirements and not enough on critical indicators like increasing academic performance or graduation rates for students with disabilities. [emphasis added]
"For too long we've been a compliance-driven bureaucracy when it comes to educating students with disabilities," said U.S. Secretary of Education Arne Duncan. "We have to expect the very best from our students—and tell the truth about student performance—so that we can give all students the supports and services they need. The best way to do that is by focusing on results," Duncan said.
Throughout the coming year, the Department will work closely with stakeholders to develop and implement a new review system that takes a more balanced, results-driven approach to assessing how states are educating students with disabilities and better targets monitoring to where it's needed most.
Since the current process of conducting on-site state compliance reviews has not focused enough on improving student outcomes, the Department will not be carrying out the visits scheduled for the 2012-13 school year to allow it time to develop a new and more effective system. However, the Department will continue to review annual performance reports as well as monitor state supervision systems.
Two bills that would require insurers to cover autism treatment in Michigan are now tied to a third that would create a fund to reimburse insurers for such treatment.
The Autism Coverage Incentive Program would allow insurers to make claims for autism treatment for kids up to age 18 to offset additional costs from the mandate. Supporters hope the program, to be funded by the state, is the mechanism Michigan needs to finally get autism treatment legislation approved, because it wouldn't penalize businesses.
"I think we've finally got to the point where we worked with the business community … to try to come up with some middle ground," said Senate Majority Leader Randy Richardville, R-Monroe, one of six senators to introduce Bill 981 last week.
State Rep. Bill Rogers, R-Genoa Township, said he's seen first-hand how Michigan families with autistic children struggle to cover treatments but is unsure where he stands on the legislation.
A former employee of Rogers' building business had a child with autism, which has given the Republican pause, however.
"I don't know if I've made a decision, but now I have a different appreciation of what it really takes" to seek treatment for autistic children, Rogers said, "and it's not fun."
Rogers said he and his legislative colleagues need a better understanding of autism before creating a potential "government monstrosity" to fund treatments.
He said he supports [Gov. Rick] Snyder's philosophy of investing in treatments today to benefit children and save the state long-term costs.
"If we do (preventive) strikes on anything, I've got to believe it's better in the long haul. The problem is, we've always done it in reverse," Rogers said.
Dave Waymire, spokesman for the Michigan Association of Health Plans, a trade group representing most of Michigan's private insurers, agreed.
Waymire said mandating polices to cover autism would create an enormous new liability that ultimately would be paid for by all customers. He said that before discussion of a state fund to reimburse insurers, however.
At MLive, psychologist Mohan Krishnan makes an economic case for an insurance mandate:
According to the Centers for Disease Control, 29 states require coverage for autism treatment. Six made the move last year alone.
Why? I believe it is because they recognize that coverage empowers highly skilled parents to continue contributing to their communities. Perhaps one of those children who benefit from this therapy today may be hotly desired innovators themselves tomorrow.
Autism coverage is a competitive advantage — these are states that will be able to attract and retain professional talent that is the cornerstone of growth. Legislation to provide coverage in Michigan would give us the edge our state desperately needs, at a manageable cost.
Prepared to remain in the military indefinitely, Lt. Col. Chuck May is determined to get his children the health care they need.
"I would stay in the Army well beyond 30 years if I knew I could have my family covered with TRICARE," said the officer in Fort Hood's Operational Test Command. "I don't care about pay raises, and I don't care about promotions."
May's sons, ages 11 and 14, have been diagnosed with forms of autism spectrum disorder. In the year before TRICARE covered any autism treatment, the May family spent $19,000 on therapy for just one of his sons.
Now TRICARE offers autism therapy through the Extended Care Health Option, but only active-duty service members are eligible to participate. If May retires, his sons lose the coverage.
"It's a really skewed system," said Stuart Spielman, senior policy adviser and counsel for the advocacy group Autism Speaks. "The people who've served the most, who are retiring after many years of service, or maybe retired because of war wounds, they won't have access to benefits."
But the coverage discrepancy would disappear if a new congressional bill became law. Sponsored by Rep. John Larson, D-Conn., and now in committee, the Caring for Military Kids with Autism Act would make autism treatment, called applied behavior analysis, available to retirees.
"We are mighty proud of our TRICARE system and to leave a gap in this system seems to be wrong," said Rep. John Carter, R-Round Rock, who is co-sponsoring the bill along with 54 other representatives. "That's not the kind of burden we should give. We should try to give effective health care to those families. They've earned it, and they're entitled to have it."
MedClaims Liaison (MCL), a leading national patient advocacy company, and Autism Speaks, the world’s largest autism science and advocacy organization, released the results of a joint survey demonstrating families seeking autism-related care are bewildered by the myriad challenges they face obtaining proper insurance reimbursement.
The survey was initiated in December 2011, when over 28,000 requests for participation were sent to advocates who have registered to receive alerts from Autism Speaks in six states where autism insurance reform laws have been enacted - California, Texas, New York, Pennsylvania, New Jersey and Connecticut.
Survey Highlights
·A majority of respondents indicated their confusion around their own state’s law and how it impacts their coverage:
26% responded “I don’t know” when asked if they lived in a state that has passed autism insurance reformunaware that in fact laws were in place
68% said they lived in a state that had passed reform, but 53% did not know how their own particular health insurance policy was regulated by the law
A majority of respondents (54%) characterized the quality of coverage for autism-related services provided under their policy as “poor” or “unacceptable”; more than half obtained services from healthcare providers who do not accept their insurance
77% of respondents are frustrated by the process of dealing with medical bills and reimbursements
47% say the amount of time they have had to spend on claims and reimbursements has conflicted with work
55% are having trouble affording their medical expenses
The lack of understanding is severely impacting access to reimbursements as 40% of respondents said they “never” submit claims if they do not think the treatment will be covered by their policy
“While it is well known that this patient population suffers from acute financial burdens and a stressful reimbursement landscape,” said Mitch Kaye, CEO of MedClaims Liaison, “the survey revealed challenges even greater than we had anticipated. Most troubling is the number of families – 86 percent -- who would utilize more necessary care for their children if some of the difficult reimbursement issues did not exist. MCL’s mission is to reduce this burden and improve the financial outcomes for the families – we are very committed to this community. ”
"[My daughter] was not diagnosed until she was seven. We have many lost years and a lot of wasted money as I tried to chase what I thought was the right therapy not knowing where to go," said Dave Meador.
He is the executive vice president and CFO at DTE Energy. His daughter is now 14, but he joined this fight for autism insurance reform because he says it's the right thing to do.
"For a lot of us that are working on this, this is for the next generation," Meador told us.
Autism advocates have been fighting for this change for years. In the past, Republicans have fought mandating insurance coverage, but Senate Majority Leader Randy Richardville came up with the reimbursement plan.
"The state government is going to fund paying for this coverage ultimately, but over the long run, the reduction in costs to taxpayers will be what this is all about," he said.
For families that have sacrificed so much for their children, it's long overdue. Although Governor Rick Snyder supports the legislation, state mental health advocates oppose it. They say the bill is too narrow and should include mental health treatments in addition to those for autism.
A vote is expected to come next week after more testimony. The package of bills would then go before the full Senate for a vote. If approved, the legislation moves back to House where it passed previously.
Governor Snyder has indicated he wants the bill on his desk so he can sign it by April 2, which is World Autism Day.
A compromise bill that would establish a two-year pilot program to help young children with autism disorders advanced Wednesday with a 67-3 endorsement by the Utah House of Representatives and now goes to the Senate for consideration.
Sponsored by Sen. Ronda Menlove, R-Garland, HB272 would help children ages 2 to 6 in a three-pronged program focused on early intervention services. It helps Utah insurance companies avoid a "mandate" of insurance coverage, but instead directs impacted children on Medicaid or the Public Employees Health Program or those with parents with no insurance to appropriate services. Part of the funding, Menlove stressed, will come from private insurance companies that have stepped up to help.
She also said non-lapsing funds from the state Medicaid program would go toward funding the $6 million price tag for help that is critical in the early, formative years of children and families struggling to cope with the disorder. That price tag is up for negotiation she added, but described herself as an "optimist."
Senate Majority Leader Randy Richardville, R-Monroe, has introduced legislation that would set up a new state fund to reimburse insurers and third-party administrators for the cost of claims they pay to diagnose and treat autism.
But SB 981 is "tie-barred" with SBs 414 and 415, meaning the bill would not go into effect unless all bills are approved and signed by Gov. Rick Snyder. He supports the autism legislation.
The bill has been referred to the Senate committee on health policy, chaired by Jim Marleau, R-Orion Township, who also supports autism legislation. ... Under SB 981, the Michigan Department of Treasury has 120 days to create "an autism coverage incentive program" that would allow funds to be deposited into it from various sources. But the bill does not mandate how much funding the state Legislature should put into the autism claims fund.
"The department shall not make a commitment or exercise its authority under this act until the Legislature has appropriated sufficient funds to cover the same," the bill says.
The department also must develop and implement an application form that can be used by carriers and third-party administrators that seek reimbursement for the coverage of autism spectrum disorders.
I discuss this decision with families even before a child is born. I tell them it's important to pick a pediatrician who shares their beliefs, as the doctor-patient relationship is a long one in pediatrics (hopefully cradle to college). Even if there may be some other disagreements down the road, you need to begin the relationship on common ground.
I've practiced long enough to remember doing spinal taps in my office and treating children with meningitis or bacterial sepsis. There were long nights spent in the ICU with families, and unfortunately, a few patients died. Some are now deaf or have other residual effects of their diseases. Each case was devastating, and I'm sure the families of every child who perished would have given anything to have a meningitis vaccine or a chickenpox vaccine for their youngster.
I understand that all parents have to make their own decisions for their children. At the same time, I get to choose how I practice pediatrics. That being said, my parents choose to vaccinate their children and we happily start off the parent/doctor partnership together. I also sleep better at night not worrying that their children will contract a vaccine-preventable disease.
Insurance Commissioner Dave Jones announced today that he has reached favorable settlement agreements with two major health insurers, Health Net and Cigna, to guarantee coverage of behavioral therapy for autism, and to provide it to all insureds whenever medically necessary.
The two new settlement agreements follow a similar settlement agreement reached last month with Blue Shield to provide behavioral health treatments, including Applied Behavior Analysis Therapy (ABA), a well-recognized and effective treatment for autism. In addition, Commissioner Jones reconfirmed that since November 2009 yet another major health insurer, Anthem Blue Cross of California, has been providing coverage of behavioral therapy for autism pursuant to Department of Insurance direction. ...As part of the settlements, Health Net and Cigna agreed to maintain an adequate provider network to enable them to provide treatment to all insureds with autism; not to reject any claims for ABA; and create dedicated customer service units or support teams specially trained to handle inquiries about ABA, requests for coverage or authorization, and for payment for ABA services. Prior to these settlements both insurers rejected claims for ABA. Anthem stopped denying coverage for ABA services in response to the Department of Insurance's direction in November, 2009, and since then has been offering ABA services as in network benefits to its insureds.
When Kim Rollins' son asked for a pair of scissors to take to school a few weeks ago, she was heartened that the fourth-grader, diagnosed with an autism-related disorder, was excited by a class project.
No, Sage Rollins explained, he didn't need the scissors for a project. He wanted them so he could cut a window in the cardboard box his teacher sent him to sit in. Sage, 10, told her that his teacher at Ronald Reagan Elementary School, in the southwest Riverside County community of Wildomar, sent him into the box when she became upset with him. Before that, she forced him to sit in a darkened supply closet, according to Rollins.
"I was outraged. I was insulted," Rollins said from her home in Wildomar, near Lake Elsinore. "I cried when I heard.
School principal Nori Chandler told a Riverside County Sheriff's Department investigator last month that Sage went into a closet on his own, when he wanted "quiet time," and was never sent by the teacher. Sage also told the deputy he went on his own when he needed a quiet place. ...
Rollins' attorney filed an administrative legal claim against the district and the teacher, a likely precursor to a lawsuit. The claim alleges that the isolation was involuntary, punitive and caused other fellow students to ridicule her son.
Using isolation as a punishment for a child with autism-related disorders not only is wrong, it is ineffective, said Ron Leaf of Autism Partnership in Seal Beach, which consults with school districts about teaching children with the disorders.
If the child knows that by acting out, he or she will be given a time out, the child may misbehave intentionally to avoid a stressful situation, such as a challenging lesson or participation in an activity, he said.
"What happened there is wrong in every which way," Leaf said.
