"Noisy" ASD Kid in Apartment Complex

Discrimination against ASD people and their parents can take many forms. In Salt Lake City, KSL-TV reports on a single mother who got eviction notices after complaints about her autistic son:

Some "Bumps" in California

California Healthline reports:

Toby Douglas, director of the state's Department of Health Care Services, called the withdrawal of autism services "some bumps" in the transition of Healthy Families children to Medi-Cal managed care.

Autism advocates begged to differ, characterizing it as a disaster in the lives of many families with autistic children because kids who received applied behavior analysis -- known as ABA therapy -- under Healthy Families stopped receiving it in the Medi-Cal system.

At an Assembly oversight hearing last week, Douglas said this year's Healthy Families transition, which goes into its final transitional phase this Friday, has gone better than state health officials expected.
...
Quynh Kieu, a pediatrician practicing in Fountain Valley, said Douglas' assessment of the Healthy Families transition was accurate in some respects.

"Coverage has been fairly good and most children have been able to keep their primary care provider," Kieu said. But her agreement ended when it came to autism care.

"For children who need ABA therapy or speech therapy, it has been nearly impossible," she said. "It's been a real hurdle to obtain the care for them."

Also in California Healthline:

Families dealing with autism often have to cobble together more than one form of health insurance to make sure treatment is covered. Regulations governing exchanges stipulate that if a family member has affordable coverage provided by an employer, dependents are not eligible for federal subsidies on the exchange.

Although policies sold in Covered California must include autism coverage, employer-funded plans are not required to include it. Families can purchase coverage through the exchange for full price, but because autism treatment is often expensive, advocates point out that low-income families need subsidies, especially those receiving a specific kind of expensive, intensive treatment -- applied behavioral analysis, known as ABA therapy.

"Speech therapy and occupational therapy are the most common forms of treatment and they are often covered by insurance, but ABA is considered the gold standard of therapy for autism and it's very expensive," said Cecily Ruttenberg, communications director for Autism Health Insurance Project.

"It was a big deal when the ACA was being put together as to whether ABA was to be included as an essential benefit. Then when it was decided that each state would decide its own essential benefits, we were thrilled that California was one of 24 states that included it," Ruttenberg said.

"But there are still a significant number of families who are not going to be able to afford ABA in California because of some of the rules in place and because Medi-Cal does not cover it," Ruttenberg said.

Autism advocates are lobbying to get ABA therapy covered by Medicaid nationally and by Medi-Cal in California. They're also working to change the regulation barring subsidies in families with employer-provided coverage

Quack Cures

At Forbes, Emily Willingham takes on five quack cures:

MMS. It stands for Miracle Mineral Solution, but it’s really bleach. I know because I tested it myself, destroying a perfectly good cloth napkin in the process. Take a look at what it does to cotton. Now imagine it on the inside of a child’s mouth, esophagus, stomach, or intestines–its peddlers encourage its administration as an enema. Horrorshow. Yet not only do parents try this bleach as a “treatment” for their children’s autism, but also a major autism conference actually featured a presenter flogging this stuff, and the claim that it “recovered” 38 children in 20 months remains on the conference site as I type this.

Chemical castration. Burning off the lining of an autistic child’s intestines might seem pretty horrific, but it can pale in comparison to the tragedy that is chemical castration to “treat” autism. I have previously broken down the background of this concept, introduced to the world of autism treatment by the now notorious father-son team of the Geiers.

... 

Chelation. Chelation is the process of using a chemical to strip metal from the blood. It’s a good thing if you have mercury poisoning, which autistic people do not have. Yet, the persistent association in some circles between mercury (as a component of the preservative thimerosal) and autism (a leap from MMR, which never contained thimerosal in the US, to “all vaccines,” most of which also never did) means that many groups still flog chelation as a treatment. It is not one. One of the metals in our bodies that we need to live is calcium–for example, it keeps our hearts beating–and at least one autistic child has died during a chelation “treatment” because it wiped the child’s blood of this life-supporting ion.

... 

Hyperbaric oxygen therapy. Also a favorite with many of the alt-med-oriented autism organizations, this therapy has been target of an FDA warning to consumers. The bottom line is, laying down a lot of benjamins to subject an autistic child to ‘oxygen therapy’ is a waste of money, a likely torture to the child, and devoid of effectiveness.

Stem cells. Pro tip: If you have to travel outside the FDA purview for a treatment (as people have done for cancer “therapy” outside the US and also do for autism), you might want to think twice about it, or more times if the second thought doesn’t convince you otherwise...

The UN Convention

At The Huffington Post, William Daroff writes of the Convention on the Rights of Persons with Disabilities (CRPD):

More than 130 countries have already ratified the convention, which commits these nations to passing and strengthening laws to promote the rights of people with disabilities. The United States was the first nation to pass a comprehensive disability rights law, the ADA, and our delay in ratifying this treaty sends the wrong message to the world and to Americans with disabilities.

Fifty million Americans benefit from the ADA, and ratifying the disability treaty would further protect their rights when they work or travel abroad. Additionally, as the treaty leads to more rights and access in other countries, American expertise and technology that improves the lives of people with disabilities will be in higher demand abroad, expanding markets for American products and businesses.

These are among the many reasons that the disability treaty has broad bipartisan support in the Senate, is endorsed by more than 500 disability organizations and 22 veterans' groups, and not just the usual progressive suspects. It also enjoys the backing of two Republican leaders I had the opportunity to work for, President George H.W. Bush (R) and former Sen. Bob Dole (R-Kan.).

These leaders understand that all people should have the opportunity to achieve economic self-sufficiency, enjoy equality of opportunity, and participate fully in society. Ratifying the disability treaty will expand the global dialogue on these issues, and American leadership in this dialogue is essential.

The Jewish tradition stresses the equality of all people before our Creator, and the obligation we share to help facilitate the full participation of everyone in public life. In the Talmud we read: "Do not scorn any person, and do not discount the importance of anything. For there is no person who does not have their hour, and there is nothing without its place."

At Left Brain/Right Brain, Matt Carey kicks an argument to the curb:

Why would AoA be afraid of putting the child’s best interests as paramount?

As you know Michael Bloomberg is now pushing for universal vaccinations for all preschoolers. This requirement will be mandated nationally with ratification of the UN CRPD and, ultimately with the ratification of the UN CRC. 

Yes. Fear vaccines. Fear the government. The author of the AoA article makes huge leaps of logic (nothing new for AoA, I know) to claim that if we ratify the Convention on the Rights of Persons with Disabilities, children will be vaccinated.

The woman who wrote this article may not even have a direct connection to the autism community or the disability community. She’s using the fear government+vaccine angle to try to get support for her cause at AoA. Here are her reasons for disliking the Convention. The CRPD would somehow give rights to homosexuals. Can’t have that here in America, can we? Well, except for here in California where we once again have marriage equality…or many other places in the U.S

Special Needs in Trenton

The Times of Trenton reports on special needs in the Trenton school district.

Despite those review channels and efforts to improve outreach, there are many parents who struggle desperately to see that their children are properly taken care of, said Nicole Whitfield, the founder of the Trenton Special Parent Advocacy Group and a mother of special needs students herself.

“There are tons of parents going through this and there are tons of parents in the district who don’t know the law and the code,” Whitfield said.

She has helped many parents of students in the Trenton school district get the assistance their children need and get placements out of district when the city’s schools are unable to provide for the children.

Whitfield learned the hard way, fighting for her own special needs children. She said her 10-year-old son who has autism was in the school district for three years, and in that time Whitfield became very familiar with the laws surrounding special services for students with disabilities and the workings of the district’s special education department.

“I had issues getting him speech and occupational therapy, problems with transportation,” Whitfield said. “Every year I was fighting.”

She said that although she and her family have moved to Willingboro, she still strives to make sure Trenton parents know their rights.

Meanwhile, the struggle continues for [Riickeema] Potter, a single parent who has three children under the age of 13. She would be willing to wait for the bus to pick up Mahkeen and solve the problem that way, but she has other family responsibilities. She has to get her 8- and 13-year-old sons to school, and she has to get to work on time. Potter is struggling to make ends meet, earning $1,800 a month working a temporary job as a clerk at the Department of Labor. She said because she was laid off from February to July she is trying to pay back bills and support her family.

“We’re not totally broke but it is difficult,” she said.

Potter said she recognizes that her son is missing out on important therapy that could help him to make progress more quickly, but right now it is not feasible to leave her job so that she can be there when Mahkeen’s bus comes.

If the district would bend the rules just slightly, it would make a huge difference to her son’s progress, Potter said. “I think he would benefit from it,” she said.

Habilitation and Obamacare

Michael Ollove writes at Stateline:

Thanks to the Affordable Care Act (ACA), habilitation services will now be widely covered for the first time in private insurance plans. Rehabilitative and habilitative services are among the 10 “essential benefits” that must be provided by all plans sold on all the state and federally run health insurance exchanges. Starting in 2014, all individual and small group health policies sold outside the exchanges also will have to cover habilitative services.

But as is the case with some of the other “essential benefits,” the federal health law mandates coverage of habilitation services without spelling out exactly what that means. The states, together with insurers and advocacy groups, will have a big say in what, and how much, is covered.
...
The cost of habilitative therapy varies widely, but can be quite expensive. One form of therapy used to treat those with autism, “applied behavioral analysis,” can cost $50,000 or more a year.

Before the ACA, habilitative services were inconsistently covered in health insurance plans. Most insurers took the view that teaching skills to the developmentally disabled was an educational matter rather than a health care concern. But as the disabled movement has gained influence over the last 50 years, that view has become far less than universal, even among insurers.

For one thing, it has become clear that financially strapped school systems do not have the resources or expertise to meet the habilitation needs of their students. In response, Medicaid in 1989 added habilitative services to its benefits menu, and dozens of states began to require insurers operating in their states to offer habiliative benefits. However, the coverage requirement varies widely from state to state, and many states have limited it to children with autism.

Lobbying for Ava's Law

Previous posts have discussed Ava's Law, a proposed insurance mandate for Georgia.  In Savannah, WSAV-TV reports:


WSAV: News, Weather, and Sports for Savannah, GA 

Also in Savannah, WTOC reports:
WTOC-TV: Savannah, Beaufort, SC, News, Weather

Reverse Discrimination and the Dilemma of Difference

This case is not specifically about autism per se, but it is a vivid illustration of the "dilemma of difference" that pervades disability issues.  In Phoenix, KSAZ reports:

The Apache ASL Apartments in Tempe on Apache Blvd near Loop 101 is one of the few apartments in the U.S. built specifically for the deaf.

A video phone lets residents ‘talk' with friends. Every unit accommodates a wheelchair. Blinking lights signal the doorbell, disposal and fans.

"It's nice to have a life that's equivalent to other people that are not deaf," says manager Linda Russell.

HUD -- Housing and Urban Development -- spent $2.6 million to help build the project because it helped the deaf.

But now the very federal agency that asked it be built to house the deaf says the complex is guilty of discriminating against people who are not deaf -- and is demanding 75% of the units be rented to those who are not disabled.

"To basically say there are too many disabled people here is just nuts," says Senator Jeff Flake.

See HUD's FAQs on Section 504 of the Rehabilitation Act. 

National Center for Special Education in Charter Schools

A number of posts have discussed charter schools. Christina Samuels writes at Education Week:

More than 2 million students are served in 6,000 charter schools around the country, but a continuing concern has been whether the rapid growth in this sector is leaving students with disabilities behind.

The National Center for Special Education in Charter Schools, a new nonprofit based in New York, hopes to break down the barriers that may stand in the way of charter schools enrolling and effectively educating students with disabilities. The center's launch was announced today at the National Association of Charter School Authorizers' conference in San Diego.
...
As a part of its fact-finding work, the center has released a report outlining the legal framework, opportunities and challenges related to special education and charter schools.
The conversation about students with disabilities in charter schools should go deeper than just examining whether a given charter school enrolls the same percentage of children with disabilities as nearby traditional schools, Rhim said. (Others have also argued for a more sophisticated approach to evaluating how charter schools educate students with special needs.)

Sex Selection and Autism

A number of posts have discussed the ethical issues surrounding the potential for prenatal testing. At Forbes, Emily Willingham writes:

Health authorities in Western Australia have reportedly given the go-ahead to a fertility clinic to perform sex-selection of embryos for families at a “high risk” of having an autistic child. According to The West Australian:

There are no genetic tests for autism, so instead of looking for a gene mutation, the screening identifies the embryo’s sex because boys are at least four times more likely to develop autism.

The test, says the report, would be done in pre-implantation embryos, presumably from in vitro fertilization. In this case, “high risk” apparently means families who have two or more boys with “severe autism.”

No existing genetics testing can confirm or exclude most causes of autism. The rationale for this test is that because autism is diagnosed four times more often in boys than in girls, male embryos would not be selected for implantation. Some research has suggested that being female might be “protective” against autism. But other studies indicate that girls and women with autism present very differently from boys and might go undetected because existing criteria skew toward the manifestations in boys.

According to The West Austrialian, “chief medical officer Gary Geelhoed said it was a sensitive area.” That’s putting it mildly. Some autistic people are not happy and view the decision as eugenicist. At the least, given how multifactorial the causes of autism appear to be and the questions of how real the sex bias in autism is, the rationale being used appears flimsy. Certainly, selecting a female embryo does not guarantee against having an autistic child.

Most ASD Kids Are on Meds

Disability Scoop reports:

Despite limited evidence supporting the practice, researchers say nearly two-thirds of children with autism are taking at least one psychotropic drug.

In a review of medical and pharmacy claims data for 33,565 kids with autism between 2001 and 2009, researchers found that 64 percent of children on the spectrum were prescribed at least one psychotropic medication.

What’s more, the study published online Monday in the journal Pediatrics, found that 35 percent of kids with the developmental disorder were given two or more types of drugs simultaneously and 15 percent were taking at least three.

...
A previous study of more than 60,000 children with autism insured by Medicaid found that 56 percent were taking psychotropic medications. The findings are similar to those of the current study — which included only privately-insured kids — suggesting that children with autism are being advised to take the drugs at similar rates regardless of their insurer, the researchers said.

Medicaid Waiver in Utah

The Deseret News reports on a Kids on the Move program called Bridges, helps ASD children ages 2–8.

During the 2012 legislative session, a bill was passed for a two-year pilot program to help provide autism services. The three legs of the bill are the Medicaid waiver program, an autism treatment account (funded both privately and by the Legislature) and the public employees health plan.

The Medicaid waiver requires a valid autism spectrum disorder diagnosis and Medicaid financial eligibility to be met.

“But that’s a little bit different than standard community Medicaid eligibility, said Tonya Hales, director of the Bureau of Authorization and Community Based Services. “Only the child’s income and assets are considered, so things like child support could come to play. ... But we didn’t have any children who weren’t available based on income.”

All 300 eligible applicants received the waiver, which provides about $29,000 a year for children ages 2–6 to receive applied behavior analysis therapy.

...
A large part of Bridges’ recent growth stems from the availability of the Medicaid autism waiver, which about half of the children at Bridges use. However, the waiver allows for only 15 hours of services that must be in-home services — a downfall of the program, according to Bowen.

Through the separate autism treatment account, about 10 percent of the children in the Bridges program receive 20 hours of therapy at the facility.

“We have found that when they’re in a public setting … they do better because they have more access to teachers and to students, so they get that social opportunity rather than just being at home,” Bowen said.

ASD Adults Navigating Social Services

In Murfreesboro, Tennsessee, Nancy De Gennaro writes at The Daily News Journal:

“There really isn’t anybody supporting adults (with autism). ... It is a very lonely, isolated journey to make,” says Dena Gassner, a licensed master social worker and award-winning autism advocate from Nashville who has helped hundreds of adults with ASD through the Center for Understanding, which she founded in 2005.
...
Systems are so complex. One of the most unsupported systems to try to navigate is Social Security,” Gassner says. “It’s like a game you have to play. But they don’t tell you what information you’re supposed to have. It’s like we’re making rules up as we go.”

For instance, one of the questions on the SSI application gives three lines to explain how a disability impairs ability to work. Someone with ASD may get bogged down in trying to sum up years in three lines and be unable to complete the form, or they may think three lines of information is sufficient.

Autism, Special Education, and Minnesota

The Minneapolis Star-Tribune  (which has run negative stories about autism services) reports on special education in Minnesota, focusing on a class in St. Paul.

“I’m impressed,” said Liz Keenan, the district’s special education director, who dropped in to check on the class’ progress. “What you are doing is phenomenal.”

The class, Keenan later explained, is full of “high-functioning” students who probably would not qualify for special education in other states. She estimates that half of the 485 children identified with autism in St. Paul would fail to meet tighter definitions used elsewhere.

Other states define autism as a disorder that “significantly” affects a student’s behavior, but Minnesota considers it a condition that can range from “mild to severe.”

Those guidelines have given Minnesota the nation’s highest autism rate in schools. A Star Tribune analysis of enrollment data shows that one of every 62 students in Minnesota public schools has been labeled autistic — twice the national average. Since 2001, more than 12,000 additional children have been identified with autism in Minnesota, a fivefold increase.

While the number of students with autism is growing nationally, “there is nothing we know about autism that would explain such a high rate,” said Michael Gerber, an education professor at the University of California in Santa Barbara who has published more than 100 research papers on special education. He called Minnesota’s rate “outlandish.”

From a subsequent editorial in the paper:

As a Star Tribune news story documented this week, some of that increased expense comes from providing services for kids diagnosed with milder forms of autism and emotional behavioral disorders. That practice helped increase special-education enrollments in Minnesota, even as national numbers have gone down. In many other states — and under federal rules — those students would not even be eligible for special education.

Earlier this year, a legislative auditor’s report suggested smart ways to address numerous “disincentives’’ that stand in the way of controlling costs. It found, for example, that about 75 percent of state special-education rules exceed what is required by federal regulations. And, the report noted, some of Minnesota’s statutes are inconsistent with the rules of its Education Department.

Researchers have said that some school leaders “overprovide’’ special services, under the logic that giving in to parental demands can be less expensive than lawsuits. To address that concern, the state can do more to clarify differences in state and federal law and to help educators understand exactly what they are obligated to provide. [emphasis added]

Another way to rein in costs would be to prevent the need for special education for some students to begin with. Some schools locally and nationally have tried a strategy called Response to Intervention that identifies struggling students early and gets them extra help, which can be as simple as math lessons in small groups. Using RTI, a Wisconsin school significantly dropped its percentage of special-needs pupils.

Schools, Wandering, and Autism

Many posts have discussed the consequences of wandering.  At Babble, Lisa Quinones-Fontanez writes:

I’m not even going to mince words here. I don’t think the New York City Public School System is equipped to handle kids with autism.

Two weeks ago, 14-year-old Avonte Oquendo, ran out of his Queens school and has been missing since. Avonte is autistic and non-verbal. His school is a District 75 school and shares a space with a “typical” school. On the day that Avonte walked out of his school, a security guard asked Avonte where he was going. When he didn’t answer (because he’s non-verbal), the guard let Avonte go, assuming he was “one of the regular kids.”

Autism is an invisible disability and it’s easy for many autistic kids to pass for “regular.” But when there is a population of kids with autism in the same building as “typical” kids, there needs to be training and awareness. Everyone in the building needs to understand what autism is and what it ‘looks’ like. If the Department of Education is not prepared to do that, then maybe they should start creating public schools exclusively for kids with autism and/or special needs.

The school was also aware that Avonte was a runner and in need of “constant supervision.” There is surveillance video of Avonte walking through the school alone and running out of the building. It was also reported that the school waited an hour before notifying Avonte’s mother, Vanessa Fontaine, that her son was missing. When Dennis Walcott (Education Chancellor) was asked about how this could happen, his answer was evasive and Police Commissioner, Raymond Kelly, doesn’t believe the security guard did anything wrong. This should have never happened. Avonte should’ve never been left unattended and he shouldn’t have been able to run out of the school. The public school system failed Avonte and they need to be held accountable.

Prevalence and Incidence in the UK and US

At BMJ Open, Brent Taylor, Hershel Jick, Dean MacLaughlin have an article titled "Prevalence and Incidence Rates of Autism in the UK: Time Trend from 2004–2010 in Children Aged 8 Years.".  The abstract:

Objectives To update UK studies begun in the early 1990s on the annual prevalence and incidence rates of autism in children; undertaken in response to a March 2012 press release, widely covered by the media, from the US Centre for Disease Control (CDC) reporting that the autism prevalence rate in 2008 in 8-year-old US children was 1 in 88, a 78% increase from a CDC estimate in 2004. This finding suggested a continuation of the dramatic increase in children diagnosed as autistic, which occurred in the 1990s.

Design Population study using the UK General Practice Research Database (GPRD).

Methods Annual autism prevalence rates were estimated for children aged 8 years in 2004–2010 by dividing the number diagnosed as autistic in each or any previous year by the number of children active in the study population that year. We also calculated annual incidence rates for children aged 2–8 years, by dividing the number newly diagnosed in 2004–2010 by the same denominators.

Results Annual prevalence rates for each year were steady at approximately 3.8/1000 boys and 0.8/1000 girls. Annual incidence rates each year were also steady at about 1.2/1000 boys and 0.2/1000 girls.

Conclusions Following a fivefold increase in the annual incidence rates of autism during the 1990s in the UK, the incidence and prevalence rates in 8-year-old children reached a plateau in the early 2000s and remained steady through 2010. Whether prevalence rates have increased from the early 2000s in the USA remains uncertain.

Autism Speaks reports:

“In the US, part of the increase in prevalence has been from increased detection, especially among ethnic minorities,” comments epidemiologist Michael Rosanoff, Autism Speaks associate director for public health research. “Disparities in access to autism services and differences in healthcare systems may be additional factors behind reported differences between countries.” Autism Speaks’ Early Access to Care and Global Autism Public Health initiatives continue to address these gaps in access to services in underserved communities.

In addition, the rate at which autism prevalence is increasing has slowed in the US over the last decade, Rosanoff notes. “While we saw a 57 percent increase between 2002 and 2006, the increase from 2006 to 2008 was only 23 percent,” he says. “We will see if this trend continues when the CDC releases new numbers.”

Finally, the US approach to estimating autism prevalence may be more comprehensive than that of the UK study. The Centers for Disease Control and Prevention (CDC) uses both medical and school records from multiple sources to detect cases. The British researchers based their estimates solely on medical records from the UK’s General Practice Research Database.

Bad Sign

Many posts have discussed insulting language aiming at ASD people and others with disabilities. Buzzfeed reports:

The bipartisan co-chairs of the House Disabilities Caucus condemned a sign reading “Thank You Tea-Tards” spotted at an Organizing For Action event on Capitol Hill Tuesday. The event was designed to pressure Republican leaders in Congress to abandon the conservative wing of their party, reopen the government, and raise the debt ceiling.

Rhode Island Democratic Rep. Jim Langevin said he understood emotions are running high as the clock ticks down to the deadline for default Thursday, but said the sign was out of line.

“It is a frustrating time in Washington right now, but I find it really unfortunate that this offensive slur was used to characterize anyone,” he said. “As co-chair of the Bipartisan Disabilities Caucus, I am a firm supporter of the campaign to end the ‘R word.’ It is derogatory and counter to the acceptance and inclusion in society of people with developmental disabilities.”

Langevin’s Republican co-chair, Nebraska Rep. Lee Terry, called on President Obama to condemn the sign.

“As someone who has worked with and fought for those individuals with special needs, Congressman Terry believes this type of language is despicable and has no place in our nation’s discourse,” said Larry Farnsworth, Terry’s spokesperson. “President Obama needs to call out his supporters at the DNC and OFA for condoning this insensitive and hurtful message during their protest.”

...
Update: The man holding the sign at the protest, David Roper, tells BuzzFeed he was not affiliated with OFA, nor did OFA know he was going to show the sign he held when he showed up at the group’s protest.

ABA and the Health Exchanges

Autism Speaks reports:

To date, Autism Speaks has identified 26 states and the District of Columbia that include applied behavior analysis in their benchmark plan. This means that insurers that offer new coverage to individuals and small businesses are expected to cover applied behavior analysis beginning in 2014. In addition to the District of Columbia, these states are Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, Illinois, Indiana, Kentucky, Louisiana, Maine, Massachusetts, Michigan, Missouri, Montana, Nevada, New Hampshire, New Mexico, New York, Ohio, Rhode Island, Texas, Vermont, West Virginia, and Wisconsin. ... 

Many of these states impose a dollar cap on the amount of applied behavior analysis that must be provided each year. Because the Affordable Care Act prohibits annual dollar limits on essential health benefits, insurers in these states can convert these limits into non-dollar limits (such as a cap on the number of sessions of applied behavior analysis each year).

Disability Scoop reports:

“The devil is in the details,” said Katie Keith, a former research professor at Georgetown University who’s now consulting with Autism Speaks through her role as director of research at the Washington lobbying firm Trimpa Group. “Every plan will say it covers behavioral health treatment but I would encourage families to make sure they know what that means because every state will be different.” 

Problems with Private Special-Needs Schools

The Newark Star-Ledger reports on Somerset Hills, one of about 180 New Jersey private schools that more than 10,000 severely disabled children attend when their public schools cannot handle them.

A two-month Star-Ledger investigation found Somerset Hills and schools like it operate in a twilight zone of the state education system, under a unique set of rules that allows them to spend taxpayer money in ways few would tolerate of public schools.

In an era when public schools are under intense pressure to do more with less, the newspaper’s review showed nepotism, high executive salaries, generous pensions, fancy cars and questionable business deals are common in parts of this more than $600 million New Jersey industry.

...
Gerard Thiers, the executive director of ASAH, an association representing the schools, said they provide a vital service for parents of disabled children, from preschoolers to high schoolers, with severe autism, speech impediments, blindness, deafness and developmental problem

...
The spending practices by these schools are not unique. There are approximately 2,600 private special-needs schools across the country, Thiers said, each with varying degrees of government oversight. Some 300 in New York have come under intense scrutiny of late.

In a report released in December, New York Comptroller Thomas DiNapoli said taxpayers there were suffering because of poor state oversight and wasteful spending — including inflated costs related to nepotism, insider dealings and criminal conduct.

...

A report released by the state auditor this year also found that as of March, 46 of the 140 private special-needs schools open since 2006 had not been visited by the state for an on-site fiscal review during the past six years.

When the reviews find excessive spending and the state demands public schools be refunded, the private schools often file lengthy appeals and pass those costs back to taxpayers. The schools spent about $554,000 on litigation in 2012, records show.

The Cost of Alternative Therapies

Penn State Currents features psychologists Kimberly Schreck and Richard Foxx:

While some doctors tell parents that alternative treatments can’t hurt, Schreck disagrees.
A child with autism may need as much as 40 hours of effective behavioral services a week.

When a family’s weekly involvement in seeking treatment includes four hours of massage therapy, six hours of sitting with head phones on listening to random sounds, and two hours having the child’s urine analyzed, valuable time is lost for methods that actually work.

“You can’t do it all. This dilutes, and in some cases, goes directly against what you’re trying to do,” Schreck said.

She and Foxx steer families toward applied behavior analysis (ABA), which teaches behaviors through a system of rewards and consequences. The National Institutes of Mental Health, the Surgeon General, and the American Academy of Pediatrics have endorsed ABA as the clinical standard-of-care treatment for autism.

...
Unfortunately, the fad treatments get more media attention than ABA does, Schreck said. She and her students have made a study of the topic, in what they dubbed the “junk science lab.”

Unproven autism treatments like vitamin therapy or facilitated communication get too much press attention in U.S. newspapers and magazines, Schreck said. She recently began analyzing television coverage as well, looking at how many times the media talks about treatments and the number of positive and negative comments.
...
Schreck and graduate student Brenda McCants are studying fad treatments from as far back as the 1800s, evaluating how they change over time. When a method stopped making money or hit a legal obstacle, practitioners would change the product name or change who they targeted. The fads did not disappear; they evolved.

Autistic Teen v. School Board

In Northport, New York, a community on Long Island, The Northport Patch reports:

The Northport-East Northport Board of Education cut off a 14-year-old boy from speaking during Monday’s meeting when the teen, who has a form of high-functioning autism, attempted to express what he felt was unfair treatment in his classroom due to his disability.

Christian Ranieri held back tears as he left the room after being shut down just a few sentences into his speech, in which he was asking the board to hear him out after he felt he was unfairly suspended for two days from school.

The school board president cited privacy laws in his reasoning for halting Ranieri's speech. The Family Educational Rights and Privacy Act protects the privacy of student education records.
...

Ranieri continued his speech, pointing out that he was trying to stand up for himself, the way others, such as Rosa Parks did. However, after he asked the board for a different person to be put in charge of implementing his IEP, Waldenburg apologized for having to stop him from speaking and Ranieri was cut off again.

“This entire discussion which involves disciplinary action is totally improper for a public session,” Waldenburg said.

“Let him be heard!” residents shouted from their seats.

Waldenburg said that the “proper audience” for the discussion would be the superintendent. However, the teen’s mother, Carina, said that when she attempted to speak with the superintendent at the school building, she was told that she would have to make an appointment and was asked to leave. Carina sent a letter asking for an appeal of the suspension, but had not received a response from the superintendent, she said.

...

After the incident in school, Renieri and his family created a Facebook page to document the teen’s journey of self-advocacy. So far, the page has garnered 220 fans and continues to grow. Avideo of Renieri's speech at the board meeting was also uploaded to YouTube where it has more than 1,500 views as of Tuesday evening.

It's gone viral. As of early Saturday morning, the video had more than 55,000 views:

CA Governor Signs Autism Legislation

The Los Angeles Times reports:

Gov. Jerry Brown has approved a 2 1/2-year extension of a program that requires insurance coverage for early autism treatment.

Since its creation in 2011, the program has helped more than 12,500 Californians, according to Senate leader Darrell Steinberg (D-Sacramento), the author of the bills creating and extending the program.

The California Autism Insurance Mandate requires private healthcare insurance plans to provide coverage for “behavioral health treatment” of children with autism and pervasive developmental disorders.

It was set to expire in July 2014, but, after the governor signed SB 126, will now operate until Jan. 1, 2017.

Autism Speaks reports that Brown signed four bills and vetoed two others that were part of a package recommended by the Autism Diversity Task Force that Steinberg created in 2012.

• SB.208, sponsored by Sen. Ricardo Lara, will require Regional Centers to evaluate the ability of outside vendors to provide culturally and linguistically competent services before awarding contracts.
• SB.367 sponsored by Sen. Marty Block, will require Regional Centers to develop annual strategic plans addressing issues of linguistic and cultural competency.
• SB. 555, sponsored by Lou Correa, lays out guidelines for Regional Centers in providing Individual Program Plans (IPPs) in a culturally and linguistically competent manner.
• AB.1232, sponsored by Assemblyman Manuel Perez, requires the state Department of Developmental Services (DDS) to account for diversity and equity when assessing the quality of services provided by Regional Centers.

Brown vetoed AB.1231, also sponsored by Perez, that would have made clear that DDS is required to facilitate the use of telehealth and teledentistry services in the Regional Center system. Brown had vetoed an earlier version of the bill, prompting Perez to reintroduce the legislation because he said providers perceived reluctance on the part of Regional Centers to include telehealth services without explicit authorization from DDS.

Brown again insisted everything required under the bill was already being done or could be done under existing law.

Brown also vetoed SB.158, sponsored by Correa, which would have established an autism demonstration program to improve linguistic and cultural competency in Regional Centers. In his veto message, Brown said the bill provided no funding source for the demonstration program.

Autistic People as Screeners

Many posts have discussed autism and employment. Mark Roth continues his series at The Pittsburgh Post-Gazette:

A study published this year by researchers at Carnegie Mellon University, the University of Pittsburgh and the University of Minnesota found that high-functioning autistic men were just as accurate and almost as fast as non-autistic people in finding weapons in X-ray images of baggage.

More important, their performance improved as time went on, particularly in correctly identifying bags that had no weapons.

Senior author Marlene Behrmann, a psychology professor at Carnegie Mellon, said "we were able to demonstrate statistically that the individuals with autism stayed more true to the task compared with people who became distracted more easily."

The study is part of a growing push to find jobs that autistic people may actually perform better than so-called neurotypical individuals.

TRICARE Letter

From Autism Speaks:

Autism Speaks has joined the American Academy of Pediatrics, Children's Hospital Association, Easter Seals and other major advocacy groups in their appeal for TRICARE to overhaul its pediatric care for military kids, including the delivery of applied behavior analysis (ABA) therapy.

The Department of Defense (DoD), which manages the TRICARE healthcare program for active and retired military members, was directed last year by Congress to conduct a comprehensive review of its pediatric care services. TRICARE now bases its reimbursement system on Medicare, which was established for adults aged 65 and older.

"Children’s health care needs, however, differ from those of adults," Autism Speaks said in its letter to the DoD. "In its recent policy statement, the American Academy of Pediatrics (AAP) describes the problems with adult-based assumptions, and recommends healthcare policies reflect pediatric specific principles and address the unique needs of children when defining medical necessity."

These needs are heightened for military children with chronic medical conditions and disabilities.
Autism Speaks recommended four specific changes to TRICARE's pediatric services program. TRICARE should

• Amend regulations and policies to reflect pediatric-specific principles
• Improve access to pediatric specialty care providers
• Emphasize family-centered care coordination
• Improve coverage of applied behavior analysis

Autism Speaks has worked with its champions in Congress to expand TRICARE's ABA benefits to meet the needs of all beneficiaries including non-active duty members. Legislation to affect the change has cleared the House of Representatives and soon will be taken up by the Senate.

In addition to Autism Speaks and AAP, comments were submitted by:

Children's Hospital AssociationMilitary Officers Association of AmericaMilitary Special Needs NetworkMaryland Coalition of Families for Children's Mental HealthEaster Seals

Intervention and Recovery

At the Pittsburgh Post-Gazette, Mark Roth writes about early intervention, with an anecdote about 4-year-old Rocco Korch:

A 2008 survey of the scientific literature reported that between 3 percent and 25 percent of children diagnosed with autism eventually recover, and a study this year at the University of Connecticut rigorously tested 34 children who had been diagnosed with autism as toddlers and are now largely free of symptoms.

Rocco's story is typical in one other way, though. Most experts say that the earlier autistic children can begin therapy, the more progress they will make.

One of the best validated therapy techniques is the Early Start Denver Model, developed by Sally Rogers, now at the University of California, Davis, and Geraldine Dawson, who recently left her post as chief science officer at Autism Speaks and is now at Duke University.

In a 2009 study of their model, which features intensive one-on-one therapy in a naturalistic setting several hours a week, children in that group showed significantly greater gains in language and thinking ability over a two-year period than autistic children in a control group. In a follow-up study last year, researchers found the Early Start group also showed more brain activation when viewing faces -- a sign of responding to social cues -- while the control group showed more brain activity when viewing objects.

In an interview earlier this year, Ms. Rogers said the key to their approach is providing therapy in everyday settings the children would already be involved in.

In older behavioral therapy, she said, "if you wanted to teach the child the names of objects, you would figure out what that child is motivated for -- food, drinks -- and you'd put out a shoe and say 'Where's shoe?' and you'd give them a treat when they touched the shoe."

In the Early Start approach, "kids come in to therapy every day and when they take off their shoes, I would say, 'Where's that foot?' or 'Give me shoe?' " And at the end of the session I would say, 'Get Jason's sock; get Sally's shoe.'

Different Autism Worlds

Previous posts have discussed the rancorous conflict of cure v. acceptance. The Pittsburgh Post-Gazette reports on the family of Jeffrey Maloney, who has low-functioning autism.

To spend time with the Maloneys is to realize that there are two different worlds in autism.
Of course, many researchers in the field now say that the symptoms and abilities of autistic children vary so widely that we ought to be talking about several different "autisms."

On a practical level, though, the picture the Maloneys paint is much different than the image people get when they see highly talented autistic people like Temple Grandin or John Elder Robison.

Among many who occupy the higher-functioning realms of autism, including those with Asperger's syndrome, there is resentment toward any talk of "curing" autism. They want the condition to be recognized as a special set of differences and gifts.

As a fundraiser for Autism Speaks, whose mission statement says it is "dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism," Lisa constantly hears from people who hate the term "cure."

"In families with autism whose kids do really well, they get almost angry at people who say we want a cure or want a change. I say to this one young man who always brings it up to me, 'Look: if my son could be you, that would be a cure.' "

"As a parent who has a child on the more severe end of the spectrum, I think that's a very different thing than someone with high-functioning Asperger's.

"I want that for my own child, to tell you the truth. I would think I had gone to heaven if my child could be an Asperger's child. But even for the Asperger's children, it's not normal. You can ask everyone to accept you for who you are, but you are not in that straight and normal part of the world."

True Increase in Autism Prevalence?

Has there been a true increase in autism prevalence?  At first look, the numbers suggest a rapid increase, but at least some of that change reflects greater awareness and shifting diagnostic criteria.Some research suggests that there has been no true increase at all.  The Pittsburgh Post-Gazette reports on the controversy:

David Amaral leans the other way. Noting that the rates of other immune disorders like asthma, multiple sclerosis and rheumatoid arthritis also are going up in America, he postulates that something in the environment may be triggering immune reactions that could play a part in autism.

"I believe there are environmental factors [that play a role], and I think we have to stay open to whatever influences there might be and be willing to explore them."

When Nancy Minshew of the University of Pittsburgh sorts through all the evidence, though, she thinks it's likely autism rates have been steady for generations.

"I tend to think [the increase] is the result of people recognizing that you can have autism and be verbal and can have above-average intelligence, and in the past those people who were verbal and particularly those who seemed so smart but could never hold a job, they got diagnosed with schizophrenia or a variety of other disorders," said Dr. Minshew, who directs Pitt's Center for Excellence in Autism Research.

In past decades, people with severe autism also were often put in institutions or kept at home, she added.

Because of that, Americans now in their 40s and older grew up without seeing many people with debilitating autism, she said. "To them, it never existed. Autism was never diagnosed, but that doesn't mean it wasn't there, but their perception was that it didn't exist."

So when older Americans look around today at all the families they know with autistic children, they see a surge in the numbers.

Dr. Minshew said she still encounters older adults who are autistic, but never received that diagnosis. "The typical adult I see who has autism spectrum disorder has about seven different past diagnoses, none of which quite fit -- OCD [obsessive-compulsive disorder], bipolar, depression. People who don't know about autism gave them a diagnosis based on some feature that looked familiar to them."

Financial Planning for Families

At Fox News, Jennifer Cerbasi writes about financial planning.  She quotes AXA financial consultant Bruce Maier on guardianships:

"Parents may not be ready to have that conversation," but, he added, by planning and putting some of the pieces in place, "You can approach the potential guardian and say 'I know this is a difficult thing to assume, but I've made some financial arrangements that may make the situation more comfortable.’"

Though financial planners and insurance agents know their products well, it's the parent of the child with ASD who truly knows the ins and outs of daily life. To that end, Maier suggests that in addition to any legal documents and plans families may put in place, parents write a letter of intent, documenting all the details of caring for their child with special needs, including medications, daily schedules, and favorite toys, movies, or activities.

"For example, if every time Johnny goes to the pediatrician, he gets a red lollipop -- and it has to be red -- that can really make or break a situation," said Maier.

Knowing that many children with autism follow specific schedules or have very unique preferences, a letter of intent, though not a legal document, may ensure vital information is passed on to those now caring for the child.

Douglas O. Baker of Los Angeles, California, is a Special Needs Advisor and, like Crawford, is a father of a child with ASD. Baker said parents should to work with someone they trust, as he has come across his share of professionals who don't necessarily have the child's best interest in mind, or don't listen to the family’s needs.

"Parents have to be wary of agents poaching special needs families, simply trying to sell a product,” said Baker. “Families drop their policy after a year because it didn't make any sense."

Autism and the Shutdown in New York

The New York Daily News reports:

In Brooklyn, parents of autistic children and young adults said they were shocked to learn that the Aviator Sports Center was a casualty of the shutdown. The sports complex is privately owned, but its location — on Floyd Bennett Field — is part of the Gateway National Recreation Area, a national park, and all national parks have been closed by the shutdown.

“My son is very hyper and this program really works out that energy,” said Anna Tomsky, 39, a divorced single mom raising two autistic children on her own.

“Instead, they’ll be home with a baby-sitter and they won’t be active. When my son doesn’t work out his energy, he can do dangerous things. My daughter will start rocking more. The program really keeps them engaged.”

Her children are enrolled in the Imagine Academy, which runs fitness programs at Aviator for those with autism.

“It’s not a great situation,” said Dean Rivera, the chief operating officer of Aviator. He said birthday parties as well as high school and college football and soccer games at the complex have been canceled this weekend.

“We’re currently trying to figure out where we can rent or help them out with space. We’re talking about thousands of people coming to our building. We’re going to have to turn all those people away,” he said. 

The 40 full-time employees and 125 part-time workers that staff the facility are getting paid, at least for now, said Rivera.

On Thursday, a manager at City Access New York — the program in which Frank Carbonaro is enrolled at Aviator — took the 40 young adults in the program to play soccer in a public park. But that was a one-time occurrence.

“It’s very difficult sending big groups like this to the parks without permits,” said Justine Schettino, a top official City Access New York. “Instead of sports or fitness that we do at Aviator, we might do a reading group next week.”

FEHB & ABA

Autism Speaks reports:

The Office of Personnel Management, which manages the Federal Employees Health Benefits Program (FEHB), has released information on insurance coverage for applied behavior analysis (ABA) in 2014. The FEHB program is the nation's largest employer-sponsored health benefits program, covering 8.2 million federal employees, retirees and dependents.

OPM urged its participating providers in 2012 for the first time to include ABA coverage, starting with their 2013 policies. This year, OPM directed participating providers to either cover ABA or explain why they were not including the benefit.

With enrollment for 2014 scheduled to start November 11, OPM said that over 50 participating plans – more plans than in 2013, according to the agency -- in all or part of 21 states and Puerto Rico will offer ABA coverage.

The analysis was provided Monday, just prior to the start of the federal government shutdown. Autism Speaks will review and analyze individual plan offerings when they become available and provide updated information.

Charter Schools and Special Education

At the Manhattan Institute, Marcus Winters has a new report titled Why the Gap? Special Education and New York City Charter Schools

From the executive summary:

• The gap in special education enrollment exists primarily because students with disabilities—particularly those with autism or who have a speech or language impairment—are less likely to apply to charter schools in kindergarten than are regular enrollment students.

• The gap in special education rates between charter and traditional public schools grows considerably as students progress from kindergarten through third grade. A large part (80 percent) of the growth in this gap over time is that charter schools are less likely than district schools to classify students as in need of special education services and more likely to declassify them.

• The other 20 percent of the growth in the gap of special education rates is explained by students transferring between charter and district schools.

• Surprisingly, the results do not suggest that charter schools are refusing to admit or are pushing out students with special needs. In fact, more students with previously identified disabilities enter charter schools than exit them as they progress through elementary grade levels. The 20 percent growth in the gap is driven by greater proportions of general education students entering charter schools between kindergarten and third grade, which has the effect of reducing the total proportion of students with special needs compared to the total number of students. In other words, the gap increases because the number of regular enrollment students in charter schools goes up as new students enroll, not because the number of students with disabilities goes down.

• The growth in the special education gap between charter and traditional public schools occurs mostly in what could be considered the most subjective categories of student disabilities: emotional disability and specific learning disability. By far, the most substantial growth in the special education gap occurs in the least severe category, that of specific learning disability. Rates of classification in what might be considered the more severe (and less subjective) categories of special education—autism, speech or language impairment, or intellectual disability—remain quite similar in charter and traditional public schools over time.

• There is great mobility among special education students regardless of whether they attend a charter or traditional public school. Nearly a third of charter school students who receive special education services leave the charter school by the fourth year of attendance. However, more than a third of traditional public school students who receive special education services leave their traditional public school before the fourth year of attendance.

Overall, the results of these findings, at least for this sample of schools, suggest that a significant portion of the special education gap occurs when children enter kindergarten. For whatever reason, students with identified disabilities (particularly students with autism and those with a speech or language impairment) are less likely to enroll in charter schools. We cannot discern the reasons for their parents’ choices in a statistical analysis alone, and the issue deserves further study. It may be, for example, that these students were enrolled in specialized pre-school programs that feed into district elementary schools. It is also possible that the parents didn’t view charter schools as an appropriate fit for their child, either because of their own assumptions or because they were discouraged from applying by counselors or by charter school staff.

Once a student enrolls in a charter school, the primary driver of the special education gap occurs because charter school students are significantly less likely to be newly classified as having a disability and are far more likely to have their IEP declassified than is the case in the traditional public school sector.

These results suggest that recent attempts to address the special education gap through legislated special education enrollment targets for charter schools are unlikely to yield meaningful results and could prove harmful to students. Regulations requiring charter schools to meet certain thresholds for the percentage of their students in special education could have the impact of forcing charter schools to push for a disability diagnosis for students who otherwise would have avoided the designation. Charter schools should be encouraged to recruit such students.

Autism and the Shutdown

Autism Speaks reports:

Many federal government activities have started shutting down as Congress failed yesterday to agree to a continuing budget resolution to keep the government running beyond September 30. Federal agencies last night submitted their shutdown plans to the Office of Management and Budget.

While the shutdown will not stop Medicaid and Social Security assistance for the nation's disabilities community, the processing of claims, new applications and other activities could be slowed significantly due to furloughs of staff. New autism research by the National Institutes of Health and prevalence monitoring by the Centers for Disease Control and Prevention also could be impacted due to furloughs. Military families could see some reductions in services provided by civilian employees. About one-third of federal employees will be furloughed.

Medicaid and Social Security funding by federal law is mandatory and therefore checks will continue to be issued. But due to employee furloughs, the processing of payments and new applications could be delayed should the shutdown become extended.

Public schools also should experience little immediate impact as they have already received a portion of their federal funding and are largely funded by state and local government.

Vulnerable areas for the autism community include the Department of Defense where civilian employees who provide support services for military families are subject to furlough.