Medicaid ABA for Autistic Adults in Nevada

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

Tabitha Mueller at The Nevada Independent:

A need for access to lifelong autism treatment services is one of the reasons Sen. Heidi Seevers Gansert (R-Reno) sponsored and helped pass SB191 during the 2023 legislative session.

The measure expands the coverage age for Applied Behavior Analysis (ABA) therapy services for people with autism from 21 to 27 for those receiving Medicaid, a government-funded health insurance for low-income people and those with disabilities. Seevers Gansert said she introduced the legislation as a way to provide relief for families and individuals who faced losing coverage as they aged out.

“There was a cliff. The child would reach a certain age, and then there were really no services available unless someone could afford to do it out of pocket,” Seevers Gansert said. “And for the Medicaid population, they can't afford to do anything out of pocket.”

...

 The little-noticed bill expanding coverage for ABA services passed unanimously out of both chambers of the Legislature in early June. Gov. Joe Lombardo signed it on June 13. 

The legislation is estimated to cost about $2.7 million over the next biennium, with $1.8 million coming from the federal government and the rest coming from state and local funds.

As of this year, under Medicaid, more than a thousand patients younger than 21 with autism receive ABA services in Nevada. 

Seevers Gansert estimates that the new legislation will help expand coverage for ABA services to nearly 130 adult patients on Medicaid, according to information provided by the state. Officials with Nevada Medicaid also said the law could lead to continued care and improved health outcomes for those with autism spectrum disorder and potential savings for out-of-pocket expenses.

But some of these numbers could be affected by statewide shortages of ABA providers and the high cost of treatment — two factors that Board Certified Behavior Analyst Molly Halligan knows first-hand.

Detention Alternative for Autistic Youth

In The Politics of Autism, I discuss interactions between the justice system and autistic people.

Denise Rosch at KSNV:

It's another busy afternoon in Judge Sunny Bailey’s courtroom.

“The terms and conditions will be as follows, you need to stay out of trouble,” she tells a young defendant.

One by one teenagers arrive for a status check, but this is no ordinary juvenile delinquency caseload.

Everyone on the docket is autistic. Requiring something more from the justice system.

“The regular probation system doesn't account for the type of thinking and the type of needs that kids on the spectrum have,” explains Chief Deputy District Attorney Summer Clarke. “So, by having DAAY court we have services and providers right there that we can plug in.”

DAAY court, or Detention Alternative for Autistic Youth aims to do exactly what the name implies.

Keep young offenders out of lockup, and the revolving door that can be the criminal justice system.

 

Nevada to Establish Diversionary Court Program

In The Politics of Autism, I discuss interactions between the justice system and autistic people.

Casey Harrison at The Las Vegas Sun:

Nevada is primed to become the first in the nation to establish a diversionary court program statewide for at-risk adolescent youths with autism, a move officials say will help children on the spectrum stay on a path of success.

Gov. Joe Lombardo held a ceremonial signing Monday in Las Vegas for Senate Bill 411, which allows family courts statewide to establish an “appropriate program” for children diagnosed with or suspected to have autism spectrum disorders. The bill passed unanimously through the Nevada Legislature.

“It shows you how much effort it takes to have successful legislation,” Lombardo told attendees at the Grant Sawyer State Office Building, which included autism advocates, judges and public defenders. “The thing that surprised me with today’s bill is that it hasn’t happened before today. And that’s unfortunate, but now, fortunately, we’re moving forward as a community.”

A child assigned to the program must be made aware of the terms for successful completion of the program, including probation or other informal supervision, and the court must also provide benchmarks to “ensure that every child is making satisfactory progress” toward completing the program.

Clark County’s 8th Judicial District Court launched a similar diversionary program in 2018, spearheaded by juvenile court Judge Sunny Bailey, who is the mother of an autistic child, she told the Sun.

That program, which is called Detention Alternative for Autistic Youth, or DAAY Court, came about after Bailey was assigned a case involving a delinquent on the spectrum. She and others from the district attorney’s office volunteered on the side to develop a tailored supervision program to fit that child’s needs.

Nevada License Designation

  A number of ASD people drive cars.

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.[i] 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.”[ii]

Michael Bell at KVVU-TV:

A bill being considered in the Nevada Legislature would require - under certain circumstances - the DMV to place a designation on a driver’s license for certain persons with autism.

AB161, acknowledges that current regulations with the DMV have symbols or other indicators of medical conditions on driver’s licenses. If passed, it would put such a designation if that person had autism.

The application for a license would include a statement from a licensed physician or an advanced practice registered nurse that the person does indeed have autism.

When cops encounter autistic people they may not respond in the same way as NT people, and things can get out of hand.  A letter of support for the bill makes this point:

My name is Troyce Krumme and I am the Vice Chairman of the Las Vegas Police Managers and Supervisors Association (PMSA). I am writing to express support for Assembly Bill 161.

If approved, this bill will help reduce the likelihood of harmful encounters between individuals with a communications impairment and law enforcement, primarily during traffic encounters. By creating a system where individuals with communication impairments can voluntarily advise the DMV of a communication impairment and the DMV can subsequently denote such on a driver’s license and vehicle registration, the likelihood of miscommunication during a police encounter is likely to reduce.

In policing, when officers have contact with citizens, we are always looking for indicators. Those indicators can go a long way in hinting to the officer how the contact will progress. Is the person going to be compliant? Is the person not going to be compliant? Why is the person not going to be compliant? Is the person showing signs of aggression? Why is the person being aggressive? Is the person showing signs that they might run? Is the person showing signs they might try and hurt me? These are all examples of things an officer working need to consider, to keep themselves and the people they have contact with safe. When trying to decipher these indicators, knowledge is power.

This bill offers an opportunity for individuals diagnosed with certain impairments that may impact their behavior patterns and could be misconstrued by an officer as aggression. Having this information potentially available for officers before or as an interaction is progressing, could give officers pause and a reason to explain the person’s behavior when the officer is deciding if force will be necessary for their protection. In a nutshell, I believe this bill could go a long way in avoiding potentially tragic outcomes from certain police encounters. I urge the members of the committee to pass this bill and put that information into the hands of Nevada’s police professionals.

I would like to add something I believe should be seriously considered. Police officers have access to other databases that show information such as local criminal history, various permits, and offender registrations. In Clark County one such database is SCOPE. The sponsors of this bill and this committee should consider adding these types of databases to this piece of legislation to increase the chances of this information getting into the hands of law enforcement. 

 

Irish Woman Nails Autism-Cure Scammer

In The Politics of Autism, I discuss autism quackery.  One particularly dangerous "cure" involves bleach.  Lately, the quacks hawking a bleach solution have rebranded it as a cure for coronavirus.

John Hand at Irish Mirror:

A man has been arrested in the US after an Irish woman alerted police that he was making and selling a bogus Covid-19 treatment.

Activist Fiona O’Leary informed cops in Las Vegas, Nevada, who lifted Elias Daniel Beltran Suarez over his scam on Monday.

Officials said his product posed “significant risks to patient health” after uncovering his makeshift chemical lab to create his bleaching agent treatment.

He claimed it could cure autism, cancer and Covid-19.

He is now facing the charge of acting as a medical practitioner without a licence.

Glenn Puit at The Las Vegas Review-Journal:

Police said the Las Vegas investigation started when an online sleuth who described herself as “a campaigner against dangerous pseudoscience” came across Suarez on the online portal Telegram under a group user name Comusav.com. The woman identified herself to the Las Vegas Review-Journal on Tuesday as Fiona O’Leary of Cork, Ireland.

In a phone interview, O’Leary said she has three children who have autism, and she learned years ago that chlorine dioxide was being peddled by fake doctors and pseudo-scientists to desperate parents of autistic children. She referred to the sellers of chlorine dioxide as “bleachers” who engage in “dangerous quackery.”

“Someone reached out to me telling me they were giving bleach to autistic children,” O’Leary said. “I thought they were mad.”

O’Leary said chlorine dioxide also is sold as a cure for cancer. She said she works tirelessly to out those who sell chlorine dioxide and report them to law enforcement. She said the treatment is especially popular in Latin America.

Nevada GOP Antivaxxers

 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 are increasingly joining up with the anti-vaxxers and anti-science crazies.  Recent examples include a member of the House COVID subcommittee and a crackpot who is seeking the party's US Senate nomination in Ohio.  Now, Nevada:

They also argue NV gaming regulators should have no say in whether casinos should be getting their employees vaccinated. It is "unfair and illegal pressure" and creates "a hostile work environment."

I kid you not.

2/4

— Jon Ralston (@RalstonReports) May 1, 2021

Here in NV, some GOP operatives are gleeful that the state Democratic Party has been taken over by Democratic socialists. What an opportunity for '22!

Wait, though! The Mensans at @NVGOP want to have a word with them:

Hold our beers!
4/4

— Jon Ralston (@RalstonReports) May 1, 2021

Reimbursement Rates in Nevada

The Politics of Autism includes an extensive discussion of insurance and explains the limits of insurance mandates.

Mark Hernandez at The Nevada Independent:

Changes in Anthem Blue Cross reimbursement rates could put intensive treatment out of reach for scores of Nevada children.

Starting in 2020, reimbursement rates that Anthem would pay to medical providers for autism-related services were supposed to be lowered to the same rate as Medicaid, which is less than the national average and which advocates have long said is woefully low. Anthem changed course a few weeks later, saying the first rates were a mistake, yet some medical providers are already looking towards other insurance companies to do business with.

“Since 2015, Anthem has continually reduced their rates by approximately 60 percent which has become cost-prohibitive for us to remain in-network with them,” said Jon Paul Saunders, clinic director of the Las Vegas-based Lovaas Center, which focuses on autism treatment. “In Anthem’s attempts to align with Medicaid rates, they have lost us as a participating provider.”

As one of the major medical insurance providers in Nevada, the dispute over Anthem Blue Cross and Blue Shield’s rates could limit which doctors are available for autism-related services. There are currently 60 children who are covered by the insurer that receive treatment from the Lovaas Center, and they may have to pay out of pocket to continue with the provider or seek help elsewhere.

A spokesperson for Anthem Blue Cross responded to a request for comment from The Nevada Independent by saying that the latest rates are the same or higher than existing levels.

Services Shortage in Nevada

In The Politics of Autism, I discuss state services for people with intellectual and developmental disabilities.

At The Nevada Independent, Michelle Rindels and Jacob Solis explain why Nevada autism families face long waits and a shortage autism services.

The number of providers is one limiting factor, and something that lawmakers tried to address through bills last session. The number of Medicaid-accepting registered behavioral technicians (RBTs) — the people who work directly with children with autism — has grown from 145 in early 2017 to 535 by late 2018.

But the number of board certified behavioral analysts (BCBAs), who supervise RBTs, has grown at a slower rate, from 26 to 53 statewide. Part of that is because it takes several years to earn a BCBA certification but only 40 hours to earn the RBT certification.

“There’s a need for more providers to participate in Medicaid. And … the economics of the situation suggest that … there is an overall shortage,” said Cody Phinney, pointing to long wait times to find a provider. “And there are providers that have made it clear that they don’t have to participate in Medicaid because there’s so much demand outside of Medicaid.”

Many people blame the shortage on the rate that Medicaid reimburses providers for the services of RBTs. The rate is $31.30 per hour — significantly lower than the $52 per hour that TriCare (military insurance) pays and lower than many neighboring states.

By the time a provider pays for a supervisor, insurance, workman’s compensation, employment taxes and other overhead, many of the actual RBTs are making a starting wage of $12 an hour.

“Not only does the job require training, but it is a demanding and intense job that may include working with individuals who are physically aggressive,” said Gwynne Partos, vice chair of the Nevada Commission on Autism Spectrum Disorders.

One RBT who testified to lawmakers said he wanted to keep serving his clients, but found that with all the driving he had to do to three far-flung clients’ homes in a given day, he could make more driving for Uber and Lyft. Another autism service provider lamented the high turnover in the job, saying she was frustrated to see a sign on a recent visit to In-N-Out saying the burger chain offered starting wages of $12 with earning potential for $15.75.

The article also discusses the state's autism court.

Detention Alternatives for Autistic Youth (DAAY) Court

In The Politics of Autism, I discuss interactions between justice system and autistic people.

In June, David Ferrara reported at the Las Vegas Review-Journal

Juvenile Court Hearing Master Soonhee “Sunny” Bailey noticed a growing number of youths entering the justice system who showed signs of autism, and many were not receiving the treatment they required.

“There’s a huge need to service these kids,” said Bailey, who recognized the symptoms, having raised an autistic daughter. “And we haven’t been able to address it until recently.”

This year, she and Family Court Judge William Voy launched Detention Alternatives for Autistic Youth Court, or DAAY Court, a specialty court geared toward helping troubled youngsters with the condition.

Jennifer Solis at The Nevada Current:

But the court is also a reflection of a system that has failed to intervene much earlier in the lives of young autistic people, when such intervention can make all the difference in behavior patterns as children get older.

Clark County District Court Judge William Voy, who runs the court’s Family Division, which includes the DAAY Court, said once a child lands in court it often takes up to six months or longer to connect them to service providers that offer effective therapies.

...
 Young offenders average about three and a half citations before they get a formal petition that lands them in DAAY court, said Voy. Most cases that make their way through the court are battery of various levels, often domestic violence charges or assault of a school employee or healthcare provider they encounter. The district attorney has the discretion to choose to file petitions against these minors.

 “It’s just really a physical representation of the school-to-prison pipeline because for children with autism who don’t get these services — the natural side effect of that is aggression,” said Bailey Bortolin, a policy director for Nevada Coalition of Legal Service Providers, who works on behalf of autistic children in the legal system. “It’s very common for an autistic child to bite someone because they’re not learning through services how to correctly express themselves.”

...

Currently, only about 290 children in the state are receiving ABA services through Medicaid. These numbers indicate a 36 percent increase in access to care since June 2017, but falls far short of the budgeted caseload of 1,879. Additionally, only some $1 million of the appropriated $42 million was spent by Medicaid through March 2017.

Advocates and lawmakers say a large part of the discrepancy is because of a workforce shortage of ABA providers. Still for many families, even finding an ABA provider that takes Medicaid can be difficult and frustrating.

Waiting in Vegas

In The Politics of Autism, I discuss state services for people with intellectual and developmental disabilities.

At The Las Vegas Review-Journal. Jessie Becker writes about long wait times in the Las Vegas Valley

"Now it's wait to get in and see the pediatrician, to get the referral to go to the neuropsychologist, to do those visits, to get the referral to go back and put him on these wait lists and hope that one of them comes through," said Jason's mom, 44-year-old Rhonda Sebron, describing the steps both their insurance company and service providers require to cover an autistic child's therapy.
...
Depending on the service needed — from diagnostics, to therapies, to state services — waits can range from several weeks to more than a year, advocates and providers say. There just aren't enough providers in town to meet the growing need of the community.

Once again, it's an example of Nevada's health care shortage. For mental health care, the state ranks toward the bottom in the number of psychiatrists and psychologists.

“When I first came here, autism was 1 in 250 (children). That was back in 2000,” said Julie Beasley, a child neuropsychologist and clinical director of the UNLV School of Medicine’s Ackerman Autism Center.

Today, more than 8,500 children in Nevada are on the autism spectrum, and 1 in 68 children are affected nationwide.

“That’s huge numbers, and the treatment of autism is very time intensive,” Beasley said.
Diagnosis alone can take up to eight hours at Beasley’s office, she said, and 10 to 15 hours with child neuropsychologist Nicole Cavenagh at the Center for Child and Family Development.

A developmental behavioral pediatrician can also diagnose autism in a child, but the single provider in Las Vegas is also the only one in Nevada, Beasley said.

“This is not a thing where we’re able to draw some blood and run a blood test,” said Cavenagh, who left Touro University Nevada’s Center for Autism and Developmental Disabilities in 2015 for private practice. Touro’s autism center plans to hire a neuropsychologist in the next few months and a developmental pediatrician within the year, renewing its ability to provide diagnostic services for parents who suspect their kids may be on the autism spectrum

Sharron Angle Is Back

Lisa Hagen reports at The Hill:

Sharron Angle’s entry into the Nevada Senate race creates a headache for Republicans hoping to sail through a primary and focus on a tough general election.

The 2010 Republican Senate nominee’s decision to run upends the party establishment’s plan to rally behind Rep. Joe Heck (R-Nev.) in an uncontested primary as the GOP looks to flip the seat being vacated when Senate Minority Leader Harry Reid (D-Nev.) retires.

If that name sounds familiar, see these excerpts from this blog on September 28, 2010:

 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.

A Shortage in Nevada

In The Politics of Autism, I discuss state Medicaid services for people with intellectual and developmental disabilities.

AT KUNR radio, Anh Gray reports:

Dr. Shannon Crozier is the Director of the University of Nevada Las Vegas Center for Autism Spectrum Disorder. She says the Nevada Department of Education has identified that there are about 7,000 young people diagnosed with autism and there aren’t enough RBTs [registered behavior technicians] to serve them.

“There are currently 274 registered behavior technicians in Nevada,” Crozier says. “A shortage of RBTs is really going to affect kids and families across the state at every level.”

Crozier says the reasons for the shortage are complex. For one, the RBT certification is new and that profession is still growing. Crozier says another problem is that at the start of this year, a new Medicaid-sponsored autism program began reimbursing nearly 2,000 eligible families for this service, which creates more demand.

“It’s going to be very difficult for newly diagnosed children to get access to services,” Crozier says. “A shortage for Nevada is really going to be felt very strongly and intimately by the individual families who are struggling to find people who are going to come and work with their children.”

Parents and autism advocates have also criticized the program saying that the approximately $30 Medicaid reimbursement rate is about $10 too low and won’t attract new and quality people to the field. Medicaid officials say it’s a fair market rate.

But Crozier says the combined issues exacerbating the shortage make it so families must wait to get the help they need.

The Behavior Analyst Certification Board defines RBT this way:

The Registered Behavior TechnicianTM (RBTTM) is a paraprofessional who practices under the close, ongoing supervision of a BCBA, BCaBA, or FL-CBA. The RBT is primarily responsible for the direct implementation of behavior-analytic services. The RBT does not design intervention or assessment plans. It is the responsibility of the RBT supervisor to determine which tasks an RBT may perform as a function of his or her training, experience, and competence. The BACB certificant supervising the RBT is responsible for the work performed by the RBT on the cases they are overseeing.

Nevada Reimbursement

In The Politics of Autism, I discuss state Medicaid services for people with intellectual and developmental disabilities

Sandra Chereb writes at The Las Vegas Review-Journal:

Parents of autistic children and providers of early intervention services urged state officials Monday to increase Nevada's proposed rate of reimbursement for treating low-income children, saying to do otherwise will doom the program to failure and deny vulnerable children essential tools to lead productive lives.

They also told administrators for the Nevada Division of Health Care Financing and Policy that Nevada's proposed $29.61 hourly reimbursement rate through Medicaid does not take into account supervisory costs or national credentials that will be required when the program takes effect next year.

"The national examination goes into effect in December," said Charles Marriot, who provides autism treatment through his Las Vegas company, Autism Care West.

"Every individual is going to have to pass a national exam," he said, adding the requirement will severely limit the number of registered behavioral technicians, or RBTs, who work with autistic children one-on-one.

Nevada currently has fewer than 100 registered behavioral technicians and will require many more to help meet the demand once services are extended to Medicaid recipients.

Limits in Nevada

In The Politics of Autism, I discuss state Medicaid services for people with intellectual and developmental disabilities

Ray Hagar reports at The Reno Gazette-Journal:

Many parents of autistic children in Nevada are at odds with the state over the amount of money the state is willing to pay to fund therapy for their children through Medicaid.
Increased awareness and funding for autism has been a hallmark of the administration of Gov. Brian Sandoval and beginning Jan. 1, one-on-one, early intervention treatments are scheduled to be offered through Medicaid to more than 1,870 autistic children in Nevada.

The Applied Behavioral Analysis (ABA) services to be offered through Medicaid have shown to be very successful in the care of autistic children, parents said.

But the state's low-ball proposal of paying an hourly rate of $29.50 for hiring and training Registered Behavioral Technicians (RBTs) who work with the children could wreck the ABA program before it begins, parents said.

"If Nevada were to set that RBT rate at 29.50 it would be the lowest in the nation," said Stephanie Hill of Las Vegas, an autism activist and parent of an autistic son.

State lawmakers debated the issue of payment to providers during the 2015 Legislature, said state Sen. Ben Kieckhefer, R-Reno, the chairman of the Senate Finance Committee, which must approve all state spending.

"I am concerned there is potential that we could have built this new program and have an inability for kids to use it because there are not enough providers," Kieckhefer. "It was an issue we talked a lot about this session – if the rate is low, we won't have enough providers."

Parents say they face a double whammy: First, the rates for the behavioral technicians are too low – especially compared to neighboring states. Second, Nevada only has about 95 registered RBTs to treat thousands of autistic children.

Nevada ranks #31 in services to people with intellectual and developmental disabilities.

Autism and Medicaid: Recent Developments

Autism Speaks reports:

In response to a July directive from the federal government to step up Medicaid-funded treatment for autism, a number of states are quickly moving forward to add benefits for behavioral health treatment. One state--Hawai'i--has been hit with a class action suit for failing to provide the coverage.

The Autism Speaks Legal Resource Center (ASLRC) has been working with advocates and state officials from around the country on implementing the July 7 directive from the Centers for Medicare & Medicaid Services (CMS), said Dan Unumb, ASLRC's executive director.

One-third of all children with autism receive primary insurance coverage through Medicaid; including secondary coverage, half of all American children with autism are impacted. Medicaid is a joint federal/state program.

"This a game-changer for the autism community," Unumb said. "How soon this will play out in each state and kids get treatment remains to be seen, but the ball is moving down the field."

Among the highlights since the CMS announcement was issued:

• California has moved forward with plans to require coverage of behavioral health treatment, including applied behavior analysis (ABA), starting Monday. An estimated 12,000 children will gain coverage through Medi-Cal, including 6,000 who currently have no coverage for treatment.
• Nevada is hosting a public workshop today to start implementing behavioral health treatment coverage through its Medicaid program. Based on the public input and further review, the state will submit a Medicaid plan change to CMS for approval.
• Connecticut Gov. Dannel Malloy has directed his administration to develop a "full range" of autism treatments, including ABA, to be covered through the state's Medicaid program. Further details are to be provided in October at a meeting of the Autism Spectrum Disorders Advisory Council.
• A federal class action suit has been filed against Hawai'i for denying ABA benefits through its Medicaid program for autism treatment. The complaint, Egan v McManaman, estimates that 1,500 to 1,900 children under the age of 21 would be affected.

Waiting in Nevada

In Las Vegas, Sandra Gonzalez reports at KSNV:

As more children are being diagnosed with autism, the availability of services are being outpaced by demand. That's what a group of experts told legislators Wednesday in Las Vegas.

"Douglas would scream and cry for hours while I was driving, he would become self abusive. He would make several attempts to bite and scratch me while I'm driving," Korri Ward told a legislative committee on healthcare.

She was sharing the experience of driving her son on a four hour trip to be tested for autism. She spoke via videoconference from Carson City, to explain life with autistic twins in rural Nevada. Her sons are now 20.

But in the Las Vegas valley, autism experts say there are still difficulties to access therapy and treatment for children with autism spectrum disorder.

"It's a mess. We have kids on the waiting list, whose lives could be changed if they were served and they are not being served," said Barbara Buckley, Executive Director of Legal Aid Center of Nevada.

Nevada Mandate Expansion Bill

LifeHealthPro reports on legislation in Nevada:

Assemblyman James Ohrenschall, D-Las Vegas, and two colleagues have introduced Assembly Bill 369, a bill that could require state-regulated health plans to cover an unlimited amount of medically necessary applied behavioral analysis (ABA) therapy.

Today, Nevada requires carriers to cover ABA therapy -- an intensive form of therapy that can cost as much as $100,000 per year in some areas -- but lets the carriers limit benefits to $36,000 per year.

Under A.B. 369, the minimum benefit cap for ABA therapy for autism would be enough coverage to pay for "30 hours of treatment per week unless a treatment provides for additional hours of treatment."

...
The board of the Silver State Health Insurance Exchange -- Nevada's Patient Protection and Affordable Care Act (PPACA) health insurance exchange -- has included an analysis of the bill in a health insurance legislative update packet.

Mandates and Costs

Jennifer Robison writes at The Las Vegas Review-Journal:

J.P. Wieske, executive director of the Council for Affordable Health Insurance, said research shows mandates are behind 10 percent to 25 percent of those premiums, depending on the state and the mix of requirements. Nevada health insurers privately say the state's average-size mandates account for 10 percent to 20 percent of policy premiums for small businesses and as much as 15 percent for individuals.

Most individual mandates contribute less than 1 percent to premiums, but they add up, Wieske said.

By the council's estimate, Nevada's 44 mandates are behind at least 19 percent of the cost of Silver State comprehensive health insurance premiums. Topping the expense list at 5 percent to 10 percent is mandatory mental health care coverage, which must be offered on par with physical therapy for an injury.

...

But health-care affordability is already a big problem for society's neediest patients, and that's why coverage requirements are so important, mandate supporters say.

"The cost of health care, especially coverage of certain conditions such as autism, can be extraordinary, so health insurance companies decide to deny coverage," said Mark Olson, a local publicist who advocates for continued coverage for autism. "But people can't get treatment because the providers won't accept them as patients without insurance, and the cost of treatment is often more than people have available in cash."

A 2006 study from the Harvard School of Public Health found that autism care for one patient can cost $72,000 a year. The Centers for Disease Control and Prevention estimates that just less than 1 percent of the country grapples with an autism-spectrum disorder.

...

Politics also affects insurance markets by dictating who will pay for specific treatments, and how those therapies will be covered.

Consider autism. Some of the blame for mandates comes from state budget crunches, which have encouraged legislators to slowly shift therapies away from public schools, where they've typically been funded, and onto private insurers, Wieske said.

"The question isn't whether those children need or deserve society's help. They do," Wieske said. "There's no question about that. But autism is an example of the states abdicating their responsibilities because of budget issues, and putting those responsibilities on insurance companies. It's a balancing act that we have to figure out. Is it fair for an individual to be priced out of insurance markets because of autism mandates?"

Wieske and Murphy both suggested reducing or eliminating some mandates by handling some coverage as riders to basic insurance plans, or letting consumers decide whether they want to pay to cover some specific illnesses. In some situations, though, riders are as impractical as mandates: Autism riders, for example, can cost as much as the $36,000 annual benefit itself.

Waiting in Nevada

KRNV in Reno reports:



AP reports:

Testifying before the Nevada Legislature on funding for autism services was a herculean effort Wednesday for Reno mother Sherrie Olson.

Her 2-year-old son A.J., wearing a Superman T-shirt, screamed and writhed in her arms. He tried to run out of the hearing room and ride the elevators up and down. He didn't speak or listen to the people around him.

It's just an ordinary day for a parent of a child with autism.

"It's the best feeling ever when you get hugs from him rather than just screaming," Olson said.

Nevada legislators Wednesday heard three bills that would rework the state's autism services and replenish funding at the same time federal money and state general funds are drying up.

Assemblywoman Melissa Woodbury, R-Las Vegas, co-sponsored AB315, which would create a single umbrella for the state's three existing autism assistance programs. AB316 would establish a standardized screening system that would allow the state to determine how many Nevadans have autism.

James Ohrenschall, D-Las Vegas, is co-sponsoring AB345, which would make a $1.5 million appropriation to fund autism programs. A budget committee would have to approve the extra money even if the bill passes the Assembly Health and Human Services Committee because the funding is not included in Gov. Brian Sandoval's proposed budget.

The three existing state funding streams support about 398 children, and at least 349 children are on the waiting list. If AB345 passes, all the children on the waiting list will receive services.

Nevada Cuts

At the Las Vegas Review-Journal, Paul Harasim writes:

[Governor Brian] Sandoval's proposal for balancing the budget without raising taxes eliminates one autism program, which serves 174 children. That move would save the state $800,000. The program already had lost its federal funding of $1.4 million. The budget also cuts $800,000, or 25 percent, of the funding for a second program, which now serves 110 children. Less than 90 children could be helped under that scenario.

Under both programs, parents can get up to $1,500 a month to pay for treatment, with money dropping to less than $800 as the child grows older.

"We should be giving more children help, not less, particularly when you consider we have thousands of children with autism in Nevada," said Jan Crandy, a member of the Nevada Commission on Autism Spectrum Disorders. "It's going to cost us much more not to provide it. Millions and millions of dollars."

Research has found that prevalence of autism is about 1 in every 110 births in the United States, translating to about 6,000 youngsters with autism in Nevada today.

Almost half the children with autism who received extensive early intervention go on to lead independent lives as adults, according to a 1987 study by autism expert Ivor Lovaas.

Without that treatment, more than 90 percent will need lifelong support from taxpayers, which can run up to $6 million per individual, experts say.

A third state program that serves children with many different special needs, including the autistic, would see an increase under Sandoval's budget, from $22 million to $24.5 million by 2013. It's an early intervention program providing up to seven hours of therapy a week for children up to age 3, but not necessarily Applied Behavior Analysis treatment.

Two bills in the Assembly, one sponsored by Melissa Woodbury, R-Las Vegas, and the other by James Ohrenschall, D-Las Vegas, would keep funding in place for the same number of autistic children. So far, neither has said how they would pay for that. Woodbury also has introduced another bill that would track the effectiveness of autism programs.

The Legislature passed an Ohrenschall-sponsored bill last session to force insurance companies to guarantee treatment of children with autism, particularly in the critical early years. But those mandates don't apply to about 40 percent of plans, which fall outside the purview of state regulation.

Among the plans that can ignore the law are those covering some government workers and collective bargaining trusts.

Video here.