Iowa Lifts Dollar Cap and Age Limit for Insurance

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.

Kayla James at KCCI-TV in Des Moines:

A new Iowa law that expands insurance coverage for Iowans with autism, impacting families across the state went into effect Jan. 1. It’s one many are calling "life-changing," including a family in Ankeny.

The Lust family says the law, HF 330, has the power to make real change for so many people across the state. It updates state insurance rules to remove annual and lifetime dollar caps on autism coverage in group plans covered under Iowa law, meaning insurers can no longer cut off autism benefits once a family reaches a specific spending limit. It also removes an age cap.

Under the previous state law. coverage was capped at $36,000 per year, and Iowans with autism spectrum disorder were covered until they turned 21-years-old.

...

The law also adds limits on insurance companies. It prevents them from capping the number of outpatient visits for autism treatment or applied behavior analysis.

State Representative Eddie Andrews sponsored the bill.  He is a candidate for the Republican gubernatorial nomination.

Andrews says institutions have been hard at work since the bill was signed to make sure they can provide care for adults, too.

“Normally it would have already started on July 1 of last year, but we gave them extra time to expand and prepare for today, so they should be ready to go,” said Andrews.

These changes give a sense of security for people and families like Brandon’s, who continue to watch him succeed and grow.

“A lot of us parents — we call it 'the cliff' when they turn 18 because a lot of things start ending — and so it’s nice that this is one thing that’s going to be able to continue for him,” said Kerry Lust.

Autism Speaks Honors Grassley

 The Politics of Autism discusses the problem of wandering, which has been the topic of legislation before Congress. Last year, the Senate voted to reauthorize Kevin and Avonte's Law and attached it to the National Defense Authorization Act,.

A.J. Taylor at KIOW-FM:

Sen. Chuck Grassley (R-Iowa) received the 2022 “Congressional Leadership Award” this week for his continuous support and advocacy on behalf of individuals with autism. Grassley led the bipartisan effort to reauthorize Kevin and Avonte’s Law with Sen. Amy Klobuchar (D-Minn.). The bill assists communities in locating individuals with autism, Alzheimer’s and other conditions that cause them to wander from safety.

The award, given by Autism Speaks, a non-profit autism awareness organization, is reserved for individuals who have championed steadfast advocacy for individuals with autism and their families. Grassley has prioritized the safety and quality of life for individuals with autism by empowering communities and caregivers to provide adequate care. The award was presented to Grassley by Keith Wargo, the president and CEO of Autism Speaks. Also in attendance was Josh Cobbs, Autism Speaks’ Director of Employment Initiatives, and the Johnson Family from West Des Moines who have long worked to raise awareness for individuals with autism.Senator Grassley receives the Autism Speaks 2022 Congressional Leadership Award. 

I’m humbled to receive this recognition. Legislation like Kevin and Avonte’s law is instrumental in reuniting families, and Autism Speaks is a vital ‘boots on the ground’ organization that facilitates this care. We will continue working to help individuals with autism reach their full potential while honoring those we have lost, like Kevin Curtis Wills of Jefferson, Iowa,” Grassley said.

“Autism Speaks is grateful to Senator Grassley for championing legislation that prioritizes the safety of the autism community. His efforts have led to millions of dollars being delivered to first responders and local organizations in communities across the country to prevent the frightening and sometimes tragic consequences of wandering. We recognize the significance of this in creating a more inclusive world where all individuals with autism can feel supported and understood, and are deeply appreciative,” Wargo said.

Iowa State Senator Pushes Bogus Notion on Autism and Vaccines

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Unfortunately, Republican politicians have been pushing this dangerous myth.

Chris Gothner at KCCI Des Moines:

Senate File 193, sponsored by five Senate Republicans, would also prohibit discrimination based on vaccine status. The Senate Human Resources subcommittee voted on a 2-1 party-line to move the bill to a full committee Thursday, as Iowa continues its COVID-19 vaccination efforts.


The subcommittee's two Republicans, Sen. Jim Carlin, R-Sioux City and Sen. Mark Costello, R-Imogene, voted in favor; its sole Democrat, Sen. Pam Jochum, D-Dubuque, voted against advancing the bill to the full Human Resources committee.

...

After Carlin posed questions to an anti-vaccination speaker, Jochum asked Dr. Caitlin Pedati, Iowa's state epidemiologist, to speak to the subcommittee. Pedati echoed a concern brought up by public health advocates.

"There's good data to show that when you increase things like exemptions, people do take advantage of them," Pedati said. "It creates pockets of under-vaccinated or unvaccinated populations, which can lead to the spread of infectious diseases like measles, which is exactly what we saw in 2019."

Carlin, who recently announced a run for U.S. Senate, quizzed Pedati about the increase in the number of vaccines and the increase in the incidence of autism, alluding to the debunked theory that vaccines cause autism.

"When I was a kid, I think I don't think we had any autistic kids in my entire class," Carlin said. "Now, it's, I don't know what the actual numbers are, 1 in 10, 1 in 9. The autism numbers have exploded. You know, I know that's a classic argument."

"There is absolutely no correlation between vaccination and autism and I can tell you that with confidence as a pediatrician," Pedati replied. "I appreciate what you're reflecting on, which is that there's been an increase and I think there are reasons for that. I think in the past, we weren't as good at recognizing some of these conditions and providing supports and keeping track of them. I think that, you know, there are also things to consider, like genetic and environmental factors."

Autism ID in Michigan and Iowa

In The Politics of Autism, I write:

[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly. Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”

On June 11, Michigan State Senator Tom Barrett issued this release.  Yesterday, Governor Gretchen Whitmer signed the legislation.

The Michigan Senate on Thursday unanimously approved Sen. Tom Barrett’s legislation to help bridge the communications gap between law enforcement and drivers with autism.

“Last year I had the wonderful opportunity to work with autism advocates across the state — including, and perhaps most importantly, my constituent, Xavier DeGroat — on an initiative to help improve law enforcement’s approach when dealing with people on the autism spectrum,” said Barrett, R-Charlotte. “The result was a bipartisan, bicameral package of bills to provide officers with vital information regarding potential communication hurdles during traffic stops, and to equip them to have positive interactions with drivers with autism or other communication impediments.”

Senate Bill 278 would allow a vehicle owner or their family member who is on the autism spectrum, is deaf, or has hearing loss or other health condition that could impede communication with a law enforcement officer to choose to put a “Communication Impediment” designation on a vehicle registration, driver’s license or both. This voluntary designation would be visible to law enforcement when reviewing the vehicle’s registration or license through the Law Enforcement Information Network (LEIN) — signaling to the officer that the owner or a family member has a health condition that may impede communication.

LEIN is a secured system not accessible to members of the public, which will protect the privacy of those who volunteer this information about themselves or their family members. Police officers routinely access the system during traffic stops.

SB 279, sponsored by Sen. Curtis Hertel Jr., would also allow the same eligible applicants to add the designation to their enhanced driver license or enhanced state ID card application.

House Bill 5541, sponsored by Rep. Frank Liberati, would allow an individual to elect a communication impediment designation on their state ID.

Xavier DeGroat of Delta Township is the founder of the Xavier DeGroat Autism Foundation and was diagnosed with autism at age 4. He has been a tireless advocate for those with autism to improve their quality of life and opportunities.

The bills were part of ideas highlighted at a “Policing Autism” event in April 2019 attended by Barrett and hosted by DeGroat’s foundation and Lansing area local law enforcement leaders.

 Kathie Obradovich at the Iowa Capital Dispatch reports on Tyler Leech, 27, an autistic person who had a stressful encounter with a police officer.

In January, he had an opportunity to visit the State Capitol with a friend, who introduced him to state Sen. Tony Bisignano, D-Des Moines. He told the senator his story.

On Thursday, the rest of the Iowa Senate heard it. Bisignano encouraged senators to pass legislation to allow drivers who have an autism spectrum disorder to request a designation on their driver’s license.

Bisignano said the measure would alert police officers that the driver has a disability that could account for a demeanor or behaviors that might otherwise be misinterpreted. “This symbol will be up front, when they ask for a license, they’ll know they’re dealing with someone on the spectrum,” Bisignano said in an interview.

Bisignano, who is in the minority party, needed to bypass the normal legislative process to attach the measure to an unrelated bill dealing with farm vehicles. He gained the cooperation of Sen. Dan Zumbach, R-Ryan, the Senate Agriculture Committee chairman, to move the legislation.

The bill provided a rare feel-good moment in the Iowa Senate.

“I’m so darn happy right now,” Sen. Brad Zaun, R-Urbandale said. “This is what is right about Iowa.”

The Senate approved the amendment on a voice vote and passed the final bill, House File 2372, unanimously. The House still needs to approve the bill with the Senate changes. Sheri Leech thinks the timing is perfect.

Iowa Caucuses

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists."

But the Iowa caucuses, the first event in the presidential nomination season, create barriers for people with autism and other disabilities.

Maggie Astor at NYT:

Talk to Iowans with disabilities and you will hear the same story over and over: a nightmarish experience in 2016, and repeated pleas that bring only vague assurances that 2020 will be better.

The state Democratic and Republican Parties say they have worked hard to make it so. The Democrats have an online form for people to request accommodations by Monday; the Republicans list a phone number, an email address and a Friday deadline. But they have publicized the processes perfunctorily if at all.

The Democrats released their form just this month, with a tweet saying they were “excited to announce” that they were offering an accommodation request process “for the first time ever.” Asked whether the Republicans had advertised theirs, a spokesman, Aaron Britt, put the onus on advocates.

“The disabilities groups are really good about making sure they get out our process,” he said. “If an Iowan has a disability but they want to be able to caucus, it’s pretty easy for them to find out what exactly they need to do.”

Yet in a state where some 300,000 registered voters have disabilities, the Republicans had received one accommodation request as of Friday, according to Mr. Britt. Ms. Koski said the Democrats had received about 160. Some additional requests have gone to local officials: Judy Downs, the executive director of the Polk County Democrats, estimated that she had fielded two dozen.

Caucusgoers said they had struggled to navigate the request processes, or hadn’t known they existed until recent days. Even those seeking simple accommodations — a chair, for instance — described a mass of red tape and unreturned calls.

Although this article does not mention autism, caucuses can be extremely stressful for many people on the spectrum.   They can be noisy, crowded, chaotic, and they require intense social interactions with strangers.

Abuse in Iowa

In The Politics of Autism, I write:

Shortly after his inauguration, Kennedy created the President’s Panel on Mental Retardation. In a 1963 message to Congress, he called for a reduction “over a number of years and by hundreds of thousands, (in the number) of persons confined” to institutions for the mentally ill and mentally retarded. He said that these persons should be able to return to the community “and there to restore and revitalize their lives through better health programs and strengthened educational and rehabilitation services.” Though he did not use the term at the time, JFK was calling for deinstitutionalization. Over the next several decades, more and more people with disabilities such as autism would stay with their families or remain in their communities instead of entering institutions. 

But some remain in institutions.

Barbara Rodriguez at The Des Moine Register:

Iowa law enforcement joined a state investigation into alleged wrongdoing at an institution for people with severe intellectual disabilities after state fact-finding efforts turned up "additional allegations,” health officials said Tuesday.

It's the first sign the state's probe into the Glenwood Resource Center involves possible criminal activity. 

"The investigation is ongoing," said Mitch Mortvedt, a spokesman for the Iowa Division of Criminal Investigation (DCI). "We're evaluating any and all information."

The involvement of state law enforcement comes weeks after the U.S. Department of Justice told Iowa officials it was investigating allegations of federal rights violations at Glenwood. Ahead of a recent visit to the facility, DOJ officials sought documentation on whether any residents were identified for inclusion in studies about sexual arousal or "optimal hydration."

 Staff for DCI, a division within the Iowa Department of Public Safety, visited the facility on Monday, Mortvedt said.

"We're going to continue to, as we gain information, put policies and procedures in place and do the appropriate investigation that we need to," Gov. Kim Reynolds told reporters on Tuesday.

In 2019, Tony Leys reported at the same paper;

A former worker at a state institution for disabled Iowans has been acquitted of a charge that she used a butter knife to strike a young man who has severe autism.

Ayla Yates was one of six former employees at the Glenwood Resource Center who were arrested in February 2017 on charges of mistreating residents. The others pleaded guilty or were convicted at trial over the past eight months, but a Mills County jury this week found Yates not guilty of a charge of wanton neglect of a health care facility resident.

“Ayla maintained her innocence throughout the entire process,” her lawyer, Amanda Heims, said Friday. “Justice was done in this case, and it’s proof that the jury process works.”

Yates, 26, was among 13 employees of the state institution who were fired or quit amid allegations that they physically abused or verbally demeaned the facility's residents, who have profound autism or other intellectual disabilities.

Iowa Passes Insurance Mandate

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

William Petroski reports at The Des Moines Register:

The Iowa Senate voted 48-0 Thursday to require many employer-provided health insurance policies to provide coverage for treatment of autism spectrum disorder for young people 

House File 215 was sent to Gov. Terry Branstad for his consideration. Both Republican and Democratic lawmakers praised the bill's final passage, saying it represents years of work by advocates for people with autism. 

Sen. Bill Anderson, R-Pierson, the bill's floor manager, said the legislation will apply to employers of more than 50 full-time workers. It will require coverage of applied behavioral analysis for persons under age 19 diagnosed with autism spectrum disorder. The bill provides maximum annual benefits, depending upon a person's age. Coverage can also be subject to deductibles, co-payments or co-insurance provisions.

Insurance and Medicaid, March 2017

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities. 

Brianne Pfannenstiel  reports at the Des Moines Register:

The Iowa House of Representatives voted unanimously Wednesday to require that insurance companies cover a treatment for autism that parents say can help provide a better quality of life for their kids.

"Our oldest daughter is autistic," said Rep. Andy McKean, R-Anamosa. "And I can simply say that my wife and I would have very much wished that this legislation was in effect back many years ago."

House File 215 would require insurance companies to cover applied behavior analysis for children with autism if they're issuing health plans to companies with more than 50 employees, or for plans to public non-state employees. Coverage would become available for families with dependents younger than 19 who have been diagnosed with autism spectrum disorder.

Madeleine Hackett  reports at WTVY, Dothan, Alabama:

50,000 families in the Yellowhammer state are affected by autism, yet Alabama is one of only five states that does not require insurance companies to pay for certain treatments.

House Bill 284 is hoping to change that.

It would require private insurers to include coverage of "Applied Behavioral Analysis" (ABA) treatment.

As it stands, families must pay out of pocket for these costly therapy sessions.

It would also require treatments for things like speech and occupational therapy to be covered by insurance companies.

You can ask your state lawmaker to support autism insurance reform.

Chairman Kerry Rich
His email is kerryrich@mclo.org
You can call him at (334)242-7538

Robert Kittle reports at WSPA:

 Parents of autistic children in South Carolina are asking state lawmakers to increase the state’s Medicaid budget that provides autism therapy. Parents, children, and advocates rallied Wednesday at the Statehouse and held signs as state senators came into the Statehouse Wednesday.
...
The problem is that South Carolina pays providers the lowest rate in the nation for that therapy. South Carolina reimburses providers $14.48 an hour for that therapy, compared to $50 in North Carolina. Because of that, South Carolina has a lot fewer professionals who provide that therapy, known as Applied Behavioral Analysis, or ABA. Since there aren’t as many providers, South Carolina has a waiting list of about 1,500 children who need the therapy and can’t get it.
...
Rep. James Smith, D-Columbia, says they’re asking for lawmakers to add at least $10 million to the state budget to increase the reimbursements, which would mean more providers offering that therapy. While it’s difficult to get lawmakers to go along with a budget increase when there are so many things competing for that money, Rep. Smith says it costs the state up to $2.4 million for lifelong care for each child who doesn’t receive the therapy. “The reality is the cost of not spending that money is costing our state far more,” he says.

The House adopted its version of the state budget early Wednesday morning and it did not contain the additional money, so advocates are hoping the Senate will add it.

Sen. Tom Corbin, R-Travelers Rest, says he’ll fight for every dollar he can. His 19-year-old twin sons were born prematurely and were diagnosed with autism. “My wife decided to leave her career teaching school and stay home with our children and see that they got the early intervention and therapies that they need. Does it work? I’m proud to say yes, it works. Both of my sons, through tremendous effort on their part and through early intervention and all the therapists and all the help we received, graduated high school summa cum laude,” he says.

Autism, Insurance, and Rural America

In The Politics of Autism, I write:

Once parents get past all the red tape, they often find that providers are scarce. Rural states may be especially short on behavior analysts, who tend to prefer to work in large metropolitan areas that have greater educational and technological resources.  If psychiatric help is necessary, it may be hard to get. There is a shortage of child psychiatrists, and insurers are of little help in finding them.

At Spectrum, Ann Griswold writes of the struggles of an autism family in Madrid, Iowa:

In a larger town, they might have been able to find a counselor trained in applied behavioral analysis (ABA), the intensive therapy that is usually recommended for children with severe behavior problems. But their community of 2,500 people has no qualified ABA providers—either state-funded or private—and they live hours away from the nearest one.

Many families in other parts of rural America face similar struggles, says Alacia Stainbrook, a behavior analyst and coordinator of an early intervention program at Vanderbilt University Medical Center in Nashville, Tennessee. “The farther you are from a major metropolitan city, the less likely you are to find a behavioral analyst,” she says. “It’s not feasible to drive two hours for a 30-minute therapy session and then back home again.”

In Iowa, more than 80 percent of the ABA providers operate in cities and suburbs—but about half of the state’s population, including Izzy and many of the 8,000 other children with autism, reside in rural areas like Madrid.

Emily Boster reports at KIMT-TV:

Christina Maulsby was in Des Moines Wednesday pushing for a bill that would provide better insurance coverage for her kids. Maulsby has two boys who are autistic. Currently her boys are seeing a behavioral therapist, but when they reach age nine, her insurance will no longer cover those sessions. The new bill would extend coverage until they are 19. Maulsby says seeing the bill progress is a relief.

The Myth That Will Not Die: Vaccines and Autism

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.

Nancy Tartaglione reports at Deadline Hollywood:

The controversial documentary Vaxxed: From Cover-Up to Catastrophe is getting a booster shot from the Middle Kingdom. Distributor Cinema Libre Studio has partnered with China’s Gaia Studio to significantly expand the U.S. release. The Chinese group also is planning to release the film in Taiwan and Hong Kong and has designs on a Chinese run. They are teaming with Cinema Libre to create a joint venture in the PROC, the new partners say.

Tony Leys writes at The Des Moines Register:

The number of Iowa parents seeking religious exemptions to vaccination requirements continues to climb, despite efforts to dispel worries the shots cause health problems.

A new state report shows 6,737 Iowa school children obtained religious exemptions to vaccinations this school year, up 13 percent from the year before and more than four times the number 15 years ago.

...
After Polk County reported its large rise in religious exemptions, Des Moines mom Tamara Bridgeman explained her thinking on why she feels such exemptions are justified for her two children. She said vaccine manufacturers aren't disclosing everything that's in the shots. “My belief is, I don’t trust the pharmaceutical companies,” she said. “I feel like I shouldn’t have to have a religion to believe in something.”

Linn County Health Director Pramod Dwivedi said he believes many of the families who seek religious exemptions are afraid vaccinations cause autism, even though multiple studies have shown the fears are unfounded. Autism Speaks, a leading national organization for families of people with autism, agrees that there is no apparent link.

Setback for Iowa Insurance Mandate

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

AT KCAU-TV, Christina Grijalva reports that, althought the Iowa Senate earlier passed an autism insurance mandate,  Iowa House members did not advance the bill.

Parent advocates, like Josh Cobbs, as well as others, have been working on this issue for about 10 years.

"My guy was a shade over five and he turned 16 on Monday," said Cobbs. "So it's been a long haul. "

The proposed bill, which would have provided coverage for those 21 and under with Autism, passed with bi-partisan support in the Senate.

"Unfortunately, there was a lot of push back from the insurance industry, the House Republicans chose not to move that bill forward out of the house commerce committee," said Iowa Representative, Chris Hall. "I think it really shortchanges a lot of families."

...
The Pier Center for Autism is the only autism therapy center in Sioux City.

However, due to insurance coverage issues, Clinical Director, Sean Peterson says, they are limited in who qualifies for treatment.
...
"Insurance coverage would allow those families to have quite a burden lifted off of them, financially, said Peterson. "But also in terms of actually getting those services to the level that their children need."

Iowa Senate Passes Mandate

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Jenna Rehnstrom reports at KCAU-TV:

Iowa lawmakers are inching closer to big changes for families who have children with autism.

A bill has been passed in the senate that would require insurance companies cover autism treatment. Right now, only state employees have coverage. State Senator Rick Bertrand from Sioux City voted "yes" and has been supportive of the efforts.

Senator Bertrand says, "From a policy standpoint you just keep whittling away. You know that the support was very very minimal [at first], to give this access to parents to treat autism as a chronic disease as opposed to an acute disease; again every year you pick up a little more support and I'm proud to say this was the year we got it through the senate 41-7."

The bill now moves on to the Iowa house.

Iowa Mandate Bill

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Jodi Whitworth reports at WHO-TV:

ABA therapy is believed to be the only research based treatment for autism but it's also expensive, costing families about a thousand dollars a week. 

[Kerry] Lust says insurance companies repeatedly denied her son’s therapy and instead was given a Medicaid waiver for children with special needs but even that's short-lived. The waiver expires for children when they turn 9 - years -  old. 

Brandon is 8. 

A piece of legislation is moving through the statehouse that would require insurance companies to provide autism therapy coverage until the age of 21.

Iowa Mandate Legislation

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Erin Murphy reports at The Quad City Times:

Coverage of autism services would be required in insurance plans offered by some large businesses under legislation that advanced Wednesday in the Iowa Senate.

The legislation would add required behavioral analysis coverage for autistic Iowans who are not already covered by Medicaid or the state employees’ health care plan, which covers autism services.

Maria Valdovinos, a certified behavioral analyst from Des Moines who teaches at Drake University, testified Wednesday at a subcommittee hearing at the Capitol that for autism patients, access to behavioral analysis services is “necessary and so important.”

Roughly 3,000 Iowans receive autism services through the state health insurance plan, a Department of Human Services official said at Wednesday’s hearing.

Michelle Schoening reports at KTIV-TV:

The debate over insurance companies covering medical treatment for those with autism continues in Iowa.

A bill in 2010 gave Iowa state employees insurance coverage for autism treatments but not for every family.

A new bill proposed in the Iowa House and Senate will provide coverage for more than 1 million Iowa families affected by autism.

...

A proposed bill in the Iowa Legislature would require all insurance companies to cover the diagnosis and treatment plan for those with autism under the age of 22.

...

A co-sponsor of the bill said it's all about providing equal coverage for Iowa families.

"Expanding to allow everyone that type of coverage it would just be a matter of fairness," said Rep. Dave Dawson.

KTIV News 4 Sioux City IA:  News, Weather and Sports

Push for Iowa Insurance Mandate

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Jenna Rehnstrom reports at KCAU-TV:

Iowans supporting insurance coverage for autism met at the capital Thursday, including a delegation from Siouxland.

Blue T-shirts and puzzle pieces were set up in the Capitol rotunda to catch the eye of lawmakers.

A bill introduced by Republican Rep. Ron Jorgensen of Sioux City would require insurance companies to cover autism treatment.

As it stands now, often that treatment isn't covered - even for doctor recommended care.

Autism advocate Josh Cobbs from Sioux City says, "A lot of our families do have to relocate at times or they go without services. So that's a pretty desperate place to be in.As well as all of our surrounding states and 42 other states in the country have passed similar legislation. So really Iowa is a little bit behind the curve when it comes to serving this type of population."

Cobbs is the father of a 15-year-old boy with autism. He's been working on this bill for 10 years and hopes this could be the year it actually gets passed.

The group "Autism Speaks" is asking Iowans to sign an online pledge to support autism insurance reform and to contact their lawmakers to suppose the initiative. You can view that online through this link.

VIDEO HERE 

Rand Paul and Autism

Previous posts discussed Sam Wessels, an Iowa kid with ASD who poses questions to presidential candidates.

At The Des Moines Register, Jennifer Jacobs reports on a Rand Paul town hall in Sioux City, Iowa:

A 12-year-old boy named Sam Wessels tried to pin Paul down on government aid for those with autism, like himself.

Wessels said he had been speaking to politicians since he was 5, starting with Sen. John McCain, "including your father, great guy by the way, and the current president twice. And they all promised to help me, but after seven years, little if anything has changed. Can you be the one we can really count on?"

Paul answered: "I'm going to give you an answer you probably have never gotten before. ... Here's the real answer. Government's never going to find — and I'm not saying government can't help, I support some government help for autism — but the answer's going to come from scientists. And politicians get in the way of most answers."

But where do the scientists get the money for autism research?  According to IACC, most comes from the federal government: 




Here the exchange between Wessels and Ron Paul:

ABA Program in Iowa

The Des Moines Register reports on Iowa's $5 million program to support ABA, which passed last year and is now going into effect.

Most private insurance plans are reluctant to cover the therapy, which can cost more then $30,000 per year. Iowa's Medicaid program has long covered it for disadvantaged children or those with severe intellectual disabilities. But until recently, the state offered no help for middle-class autistic children with average intelligence. 

Legislators almost never earmark millions of dollars for a specific treatment for any illness or disorder. Rep. Dave Heaton, who spearheaded the proposal to make an exception, said the selling point was the prospect of helping autistic children get on track. 

"If these kids don't move toward living somewhat normal lives, when they become adults, they'll be under state care for the rest of their lives, and that's very, very expensive," he said. 

Heaton, a Mount Pleasant Republican who oversees spending on human-service programs, said legislators considered requiring private health-insurers to pay for the therapy, but determined it would be a tough sell. The prospect of adding a special Medicaid program to pay for a range of autism therapies seemed too expensive, Heaton said. 

Legislators instead decided to pay directly for Applied Behavior Analysis. "Of all the things that are out there, this has been the most successful approach," he said.

Coverage in Iowa

In Des Moines, WHO-TV reports on implementation of an Iowa law giving state employees insurance coverage for ABA.

Wellmark is the insurance administrator for the state.  In a letter to Wellmark last August, the Iowa Insurance Division directed Wellmark to “establish and implement procedures to pay for statutorily covered autism services.”  It also directed Wellmark to “implement and establish new procedures as quickly as possible due to pending claims.”

Wellmark representatives say the statute is “complicated” and they have questions about exactly who can provide ABA therapy.  In Wellmark’s response to the Insurance Division, it asks for further “clarification and guidance” on matters such as “educational and licensure/certification requirements of such “others” for whom certified behavioral analysts may act as supervisors.

“The insurance company doesn’t want to pay for those services or doesn’t know how to pay for those services when the Board Certified Behavioral Analyst isn’t sitting across the table from the child,” says [Steve] Muller [executive director of the Homestead].  ”And we don’t understand that when other insurance companies pay for that service.”

...

Wellmark doesn`t lose money by paying the claims because the state is self-insured, the insurance company is just the administrator for the state.

Will Iowa Follow the Michigan Model?

The Des Moines Register reports on a bill in Iowa:

A key state lawmaker on Thursday said he’ll ask the Legislature to set up a $6 million account to help treat Iowans with autism.

Rep. David Heaton, R-Mount Pleasant, told a legislative panel he wants to create a system similar to one approved in Michigan. Instead of merely mandating that insurance companies cover certain programs for autism patients, a bill he is drafting would allow the insurance companies to submit therapy receipts to be reimbursed by the state for the key services, while the money lasts.

“So it’s a mandate, but then again, it isn’t,” Heaton said. He and others suspect a pure mandate would be blocked in the Republican-controlled House of Representatives.

Sen. Daryl Beall, D-Fort Dodge, also is pushing for legislative action.

Details of Heaton’s bill were disclosed as about 40 people, most of whom have children with the complex brain disorder, filled a meeting room at the Statehouse to call for action. They wore matching blue shirts that pointed out autism is treatable.

Shortage of Child Psychiatrists

Apparently in response to Newtown,  the media are reporting on the shortage of child psychiatrists.  Unfortunately, some of the resulting stories refer to autism as a "mental illness."

From The Des Moines Register (via USA Today):

More Iowa children are being diagnosed with mental illness than in past decades, especially autism and attention deficit/hyperactivity disorder. The increase in children needing mental health care and an inadequate system to help them are among an array of challenges facing this generation of Iowa's kids.

"There really isn't a children's mental health system," said Dr. Jennifer McWilliams, a child psychiatrist at the University of Iowa. "So much needs to be improved — I don't even know where to begin."

From The Bangor Daily News:

For at least 30 years, experts have been sounding the alarm about the shortage of child psychiatrists across the country. In 1980, the Graduate Medical Education National Advisory Committee said so many children and teens were projected to need help that the U.S. would require 8,000 to 10,000 child and adolescent psychiatrists by 1990. In 1990,the Council on Graduate Medical Education said the country would need 30,000 by the year 2000.

Neither goal was met.

In 1999, the surgeon general said only about 20 percent of mentally ill children received mental health services and only a fraction of that 20 percent got that help from a child psychiatrist. Today, according to the American Medical Association, there are about 7,600 practicing child and adolescent psychiatrists in the county, less than experts said the U.S. would need 23 years ago.

Urban areas typically have the easiest time finding and keeping psychiatrists. Rural areas struggle the most.

And Maine is very rural.

“I see a huge need,” said Sandra Fritsch, a child psychiatrist and president of the Maine Council of Child Adolescent Psychiatry.

She created a map to show the number of child psychiatrists in each county in Maine. In 2011, Cumberland County had the most at 22. Androscoggin County had four.

Oxford, Franklin and three other counties had none.

The New Haven Register quotes  Gregory Fritz, director of child and adolescent psychiatry at the Brown University School of Medicine and academic director for Bradley Hospital in Providence, R.I..  Fritz identifies three reasons for the shortage:

It takes a minimum of five years in medical school to become certified in both adult and child psychiatry and can be longer, similar to some higher-paying specialties. More years in school mean higher student loans.

“The medical students to my eye now pay a little more attention to income … and the reason is their debt is much higher,” Fritz said. He said child psychiatrists earn about the same as general practitioners. So, many students who want to work with children go into pediatrics instead.

Insurance reimbursements are given for the service, not the time spent on evaluations or medication sessions. “The problem is it takes longer to do it for a child,” because parents and teachers must be consulted. “Fundamentally, the payment per hour is less,” Fritz said.

Finally, “there is still significant stigma about mental illness and psychiatric patients, and that stigma also applies to those who treat those stigmatized patients,” Fritz said.

Not surprisingly, the insurance companies screw up:

 The Register called several doctors’ offices listed on Aetna’s website as “Psychiatry, child and adolescent.” Of those who responded, all said they treat adolescents only, despite being listed as treating children as well.

“I will see about age 15 and my partner will see a little bit younger; he’ll see 14,” said Dr. Douglas Berv of Hamden. “I’m not trained or certified with children and that’s where you’re running into a problem.”

He said of the rosters of providers issued by insurance companies, “Their lists are never correct.”

Another on Aetna’s “child and adolescent” list, Dr. Robert Ostroff, head of adult psychiatry at the Yale Psychiatric Hospital, said he does not treat children and has heard of the problems in finding doctors who do.

“It’s been very hard to get my insured patients’ children seen by child psychiatrists,” he said. “I have people who can’t afford to pay out of pocket. … It’s a real problem.