Autism Speaks, Google, and a Genetic Database

Julie Bort writes at Business Insider

Autism Speaks has teamed up with Google for a project called MSSNG to create the world’s largest database of genetic information on people with autism. The director of MSSNG is a famous geneticist, Stephen Scherer.

Google has actually been working with Autism Speaks on this project since the summer. The news on Tuesday is that the database will now be freely shared to other scientists.

Many news organizations have reported this development.  What sets this report apart is the characterization of Autism Speaks:

Not everyone "on the spectrum" suffers from some of the developmental problems associated with autism, nor views autism as something that needs to be "cured."

And because of that, Autism Speaks and this project in particular is controversial in the autistic community. A blogger on the Autism Women's Network went so far as to call Autism Speaks a "hate group."

Autism Speaks said this project is for people who do want more information and more treatment options.

ASD Youths and Crime in Pennsylvania

Mainline Media News reports:

Newly published data indicates that the number of Pennsylvania minors with autism who are getting caught up in the juvenile criminal justice system increased dramatically from 2005 to 2011, prompting researchers to call for a deeper dive into the numbers and the implementation of more strategies to guide law enforcement and other agencies in their encounters with individuals with autism.

According to the 2014 Pennsylvania Autism Census Update — a report funded by the Bureau of Autism Services in the Pennsylvania Department of Public Welfare, and a follow-up to the inaugural Pennsylvania Autism Census Project, which was released in 2009 — the rate of juvenile justice system contact among individuals with autism grew from 659 per 10,000 people in 2005 to 1,423.4 per 10,000 people in 2011.

The most common criminal charges in these cases involved property offenses and incidents of physical contact, the report states.

“Individuals with autism who have contact or multiple contacts with the justice system are (an) at-risk group both because contact with the justice system can be traumatic and misunderstood, and because the short- and long-term costs to the system for crisis events are generally disproportionate when compared to the cost of the services that might prevent such events,” the report concludes.

FAPE Behind Bars

Michelle Diament reports at Disability Scoop:

Kids with disabilities have the right to a free appropriate public education complete with academics, therapies and other supports even if they’re locked up, federal officials say.

In new guidance, the Obama administration is reminding states and local agencies that students do not relinquish their rights under the Individuals with Disabilities Education Act if they are incarcerated.

“The fact that a student has been charged with or convicted of a crime does not diminish his or her substantive rights or the procedural safeguards and remedies provided under the IDEA to students with disabilities and their parents,” wrote the U.S. Department of Education’s Melody Musgrove and Michael Yudin in a letter being sent this week to state and local officials responsible for educating youth in correctional facilities.

The “Dear Colleague” correspondence specifying obligations under IDEA comes as part of a broad package issued jointly by the Education and Justice Departments designed to clarify responsibilities to all students who are incarcerated.

The issue is meaningful, according to Attorney General Eric Holder, since about 20 percent of youth in juvenile justice facilities have disabilities and many are not getting the services they need.

Autism and Medicaid

From Autism Speaks:

1) What has changed recently regarding Medicaid coverage for autism that has caused so many questions and concerns from the autism community?

The federal Centers for Medicaid & Medicare Services (CMS) in July advised the states that they must cover all medically necessary care for children with autism through age 21. The obligation is part of the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit.

2) So what is specifically covered for autism now under Medicaid?

Congress specifies which benefits are mandatory under Medicaid, but the federal government does not mandate specific treatments. [emphasis added] For instance, Medicaid covers childhood cancer, but there is no “mandate” to provide chemotherapy to treat it. Instead, the states are directed to provide all medically necessary care for specific conditions.

Because it is up to each state to define “medical necessity,” Autism Speaks will closely monitor whether any state ignores the scientific evidence and determines applied behavior analysis (ABA) is never medically necessary for autism. In addition, a child’s treating physician must determine that ABA is medically necessary.

In those cases when ABA is determined to be medically necessary, it must now be a covered EPSDT benefit under Medicaid.

3) This directive from the federal government was issued in July. But many families say they still can’t get benefits through Medicaid. Why the delay?

The states are being provided time to incorporate the new federal guidance into their Medicaid plans. CMS said that states may need time to review their current programs to determine if any regulatory or policy changes are needed, and also to seek out public input, but stressed this must be done “expeditiously.”

While CMS did not establish a specific compliance date, it did make clear that the states are now obligated to deliver medically necessary care and should not “delay or deny” the provision of services.

4) Officials in my state say covering autism benefits will add tens of millions of dollars to their Medicaid budgets. Is this true? 

State estimates regarding the cost of providing autism benefits through insurance have historically been wildly inflated. For example, when South Carolina was considering legislation to require private insurers to cover autism, state officials estimated it would cost $10.6 million a year. Once the law was passed, the actual cost came in at $2 million per year, less than one-fifth of what the state had predicted. Similarly, a projection developed by Arizona overestimated the actual cost by 1,200 percent.

5) If Medicaid is a federal program, why aren’t the states just ordered to comply?

Medicaid is a joint federal/state health care program for lower-income children, individuals with disabilities regardless of age, and other groups. The federal government and the states share the cost and responsibilities of running Medicaid. The states typically have broad leeway in how they manage their Medicaid programs, but must provide certain mandatory benefits in ordered to receive federal matching funds. EPSDT is a mandatory benefit.

6) Why is Medicaid coverage considered such an important issue if only certain groups are covered?

Medicaid is the primary source of health insurance coverage for one-third of all American children with autism; including secondary insurance coverage, one-half receive Medicaid benefits.

7) If my child has Medicaid and has been denied ABA, even after being recommended by a doctor, what can I do?

Your child has the right to any and all medically necessary treatment regardless of whether or not your state has added ABA to its Medicaid program. Under federal law, Medicaid beneficiaries have the right to appeal any benefit denials. If you feel like your child has been denied medically necessary benefits under Medicaid, you have the right to file an appeal with your Medicaid health plan and your state Medicaid agency. To find out how to file an appeal of Medicaid benefits denial, contact your Medicaid health plan or state Medicaid agency.

8) My state says that ABA is covered, but my Medicaid health plan keeps denying my providers’ claims saying they’re not covered, or because they don’t have any contracted providers, or for some other excuse.

Almost half of all Medicaid-covered children are enrolled in managed care, which means their state has contracted with a private insurance company or HMO to manage their program. When this happens, the insurance company acts on behalf of the state to make benefit determinations. However, the same rights to appeal still apply.

Deadly Wandering

Vincent Jackson writes at The Press of Atlantic City: 

Christine Czaja’s autistic son, Bode Taylor, was 3 when he wandered away from home for the first time.

“We were outside on the deck. There are gates everywhere that we installed for Bode. There is a gate on the outside deck. My daughter had come in the house real fast, and she left the gate open, and he wandered right to the front of the house,” said Czaja, 41, of Upper Township.

There was a line of traffic backed up in front of her house. Czaja thought the worst.

“We were like ‘Oh my God,’” said Czaja. But the family was lucky. Someone had seen the child in the road, stopped and picked him up and carried the boy home.

Czaja remained vigiliant in the years that followed, but it wasn’t enough. Bode’s wandering turned deadly when the boy left his gated backyard play area, maneuvered past the pool gate and accidently drowned. He was one month shy of his fifth birthday.

One in 68 children is identified with autism spectrum disorder. It’s estimated to affect more than 2 million people in the U.S. While autism is gaining more attention, the tendency for children with the condition to wander away from home or bolt is little known to the general public. Children with autism often have an extreme attraction to water and busy streets, which is made even more dangerous by them having little to no concept of danger. Drowning is the leading cause of death for children with autism.

Autistic and African American: A Father's Fears

A number of posts have discussed encounters between police and ASD people. The Ferguson shooting and the Garner incident in New York have many African American parents on edge. At Medium, David Dennis, Jr. writes:

Just this week, one of our therapists sent a behavioral plan for Langston, saying that if he didn’t follow spoken instructions then we should physically guide him to do what we want from him. But his therapists are White. And as incredible and helpful as they’ve been, they don’t live with the reality that we do. Our son needs to know how to follow verbal instructions because if he doesn’t, a cop will find that as justification for ending my boy’s life. While we have to modify our language and communication to better convey our needs to our son and build his social skills, him knowing how follow explicit police instructions is non-negotiable. It’s life and death. I need him to know these things.

I keep thinking about what would happen if a cop is wearing gloves and puts his hands on my son. And my son pulls away because the texture of the gloves bother him. Or if my son just doesn’t like being touched by strangers. Or doesn’t react well when people point or raise their voices at him. Right now, the best way to get Langston to follow instructions is to get at eye level with him and explain very calmly what we need from him. What if that’ll always be the best way to communicate with him and a cop sees my son’s inability to process orders as an act of disobedience. What if my son pulling back from a cop is seen as an act of aggression? What if a simple repetitive motion is mistaken for an attempt at physical confrontation? If a cop is yelling at my son and he doesn’t respond because he doesn’t understand, what’s stopping the cop from murdering my boy in cold blood?

Rodgers, Sessions, and Crenshaw on the ABLE Act

Representatives Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX) and Ander Crenshaw (R-FL) talk about the ABLE Act:

Charter Schools in DC and NY

Arianna Prothero reports at Education Week:

Fielding phone calls from parents asking about enrollment is part of everyday business for schools, but for some charter schools, the person on the other end of the line may only be posing as a parent.

Modeled after “mystery” or “secret shopper” services used in retail, authorizers in the District of Columbia and Massachusetts are using a similar tactic to make sure the charter schools they oversee are not turning away students with more specialized needs, such as children with disabilities or who are still learning English.

This issue has long dogged the charter sector which nationally, some studies show, enrolls a lower percentage of students with disabilities compared to regular public schools. The discrepancy, some charter critics say, comes from the publicly funded but independently run schools turning away such students in order to improve test scores.

“We started this because there was huge a perception among the public that charters counseled out students with disabilities,” said Naomi R. DeVeaux, the deputy director for the District of Columbia’s public charter school board. “We wanted to know if this was true.”

...
Multiple studies show that charter schools serve a smaller share of students with disabilities than regular public schools. Several reasons are floated to explain why: charter schools counsel students out; public schools over-identify students with disabilities; or for whatever reason, parents choose not to enroll their students in charters.

One of the early major reports documenting the discrepancy in special education enrollment numbers between charters and district schools nationwide was a 2012 U.S. Government Accountability Office report. Pulling data from the 2009-10 school year, the report found that, nationally, eight percent of students enrolled in charter schools had a disability compared to 11 percent in regular public schools.

Eliza Shapiro writes at Capital New York about the head of New York City Chancellor Carmen Fariña, who is visiting charter schools.

The New York Center for Autism Charter School provides specialized instruction for children with autism. And the Voice Charter School, which Fariña visited this fall, offers daily instruction in choral singing.

“I visit all schools with the same thoughts in mind: how is the school community serving the students of that particular community,” Fariña said. “Are they serving English language learners and students with special needs?”

Fariña is facing a wave of criticism from charter school advocates after she claimed some charters under-enroll English language learners and special education students, and that some charters cherry-pick high-performing students to boost test scores.

Groups like Families for Excellent Schools and the New York City Charter School Center have called upon Fariña to provide evidence backing up her claims or to retract them. F.E.S., which declined to comment for this article, will hold a rally at City Hall today demanding an apology from Fariña.

The de Blasio administration has had a troubled relationship with the city’s powerful charter school sector. De Blasio criticized charters during his mayoral campaign, singling out Success Academy C.E.O. Eva Moskowitz, whose schools Fariña has notably not visited. Spokespeople for Success did not respond to a request for comment.

De Blasio suffered a significant political blow in a losing battle against large charter networks during the spring, as the schools battled the mayor over space. During the feud, de Blasio allied himself with a coalition of independent charters, which defended the mayor’s stance on charters.

The Limits of ABLE

At Forbes, Howard Gleckman praises the House for passing the ABLE Act but frankly acknowledges its limitations:

The House passed the measure yesterday and the Senate is likely to approve it before adjourning for the year later this month. The law is a serious attempt to address a real problem—the financial challenges faced by many people with disabilities. But it is too limited and too poorly targeted to really address those issues. Mostly, it is more evidence that Congress cannot respond to the enormous financial challenges of caring for those who need long-term supports and services with small, patch-work solutions like the ABLE Act.
...
Crucially, only people who became disabled before reaching age 26 would be eligible. They could continue to participate after 26, but the onset of their disability must have occurred prior to that age. For the most part, ABLE would be limited to people with developmental disabilities, mental illness, and severe childhood conditions such as cerebral palsy.

Few older adults would be eligible since their disability usually results from late-in-life diseases such as dementia, heart failure, and severe arthritis.

In addition, while the program benefits those with friends or relatives who can contribute to the accounts, it does much less to help those from truly low-income families who may not have money to give. Some of those who would benefit already have access to another mechanism, Special Needs Trusts.

The first problem does not really apply to autism, since diagnoses usually come during childhood.
The second is more relevant.  I am grateful that ABLE will help middle-class families like mine, but it does not do much for those with greater economic challenges.

ABLE Act Passes the House

By a vote of 404-17, the House of Representatives just passed the ABLE Act, which now goes to the Senate.

Earlier, several members expressed their support.

Representative Ander Crenshaw (R-FL), the prime sponsor:



Representative Sander Levin (D-MI), ranking Democrat on the House Ways and Means Committee:


Representative Pete Sessions (R-TX), father of a Down Syndrome child and chair of the House Rules Committee:



Heritage expressed disapproval of the bill.  In his comments, House Majority Whip Steve Scalise calls it a conservative bill.

Ohio, Autism, and Mental Health Parity

At The Columbus Dispatch, Jim Siegel reports on Ohio legislation that would amend the Mental Health Parity Act to include insurance coverage for Autism Spectrum Disorders.

The Ohio Chamber of Commerce and the National Federation of Independent Business/Ohio will make Senate Bill 276 a key vote that they use to score lawmakers if amendments are added dealing with health insurance mandates for brain injuries and autism. Making it a key vote means that lawmakers who vote for the bill will get a negative score from the groups.
...
The autism bill would be more costly than the brain injury mandate, [CoC spokesman Keith] Lake said, but the brain injury bill “essentially is being done to the benefit of one company.”

That company is Mentis Neuro Rehabilitation of Houston, Texas, which has testified in support of the bill and runs a facility in Stow, Ohio. The company is represented by Robert Klaffky and Doug Preisse, a pair of influential lobbyists, particularly among House Republican leadership.

Klaffky and Preisse also represent Autism Speaks, a national autism advocacy organization.

The amendments have been drafted and could be offered in the House Health Committee on Wednesday. Committee Chairman Rep. Lynn Wachtmann, R-Napoleon, said he opposes the amendments and was not sure what was going to happen with them.

The request to amend the bill appears to be coming from House leadership. Smith, the prime sponsor of the brain injury bill, said he did not advocate for the amendment. In fact, when asked if the bill is ready for passage, he said, “not at this point, in my opinion.”

Common Core Math and ASD

At Education Week, Liana Heitin writes about Common Core math, using the example of  Jeff Severt, who wrote a teacher about an assignment for his ASD second-grader.

A word problem about a fictional student named Jack had put Mr. Severt, of Cary, N.C., over the edge. It asked students to look at Jack's "notes," including a number line with arcs indicating he'd skip-counted backward, and figure out where he went wrong in calculating 427 minus 316. "Write a letter to Jack telling him what he did right and what he should do to fix his mistake," the problem said.

Mr. Severt's wife snapped a picture of the "common core" math problem and the note to the teacher, and put them on Facebook. The post went viral.

Reactions to the problem ranged from angry aspersions cast at the federal government (the supposed purveyors of the Common Core State Standards) to strong defenses of the teacher and the task. Many people sympathized with Mr. Severt's frustration that the problem made a simple subtraction task into a complicated, multistep production.
The response from the lead writers of the common standards for math was perhaps the most interesting: The problem wasn't part of the common core, said mathematicians William G. McCallum and Jason Zimba. It was simply the product of a badly written curriculum.

...
Mr. Severt, of Facebook renown, eventually replied to the barrage of comments on his son's math problem. He explained that his son, who has autism spectrum disorder, "knew the math answer immediately in his head. But this problem required a narrative answer utilizing a number line. While he knew the math, he balked at the answer being a writing assignment—his greatest anxiety." Mr. Severt decried the focus on "next-level critical thinking" over basic operations with such young students. At the same time, he defended the assignment to a point, calling it "creatively valid."

—Image From Facebook

Retention and Dropout Rates in Utah

A new report discusses retention and dropout rates in Utah:

As a group, Utah students with disabilities had poorer outcomes than their general education classmates, but outcomes varied by disability category, highlighting the differences among students with disabilities. For example, students with an emotional disturbance had the weakest outcomes overall. Compared with students in all other disability categories, they had the highest rates of leaving their school or dropping out. After four years of high school, more than 50 percent either dropped out or remained in school without graduating. Students with multiple disabilities, intellectual disability, traumatic brain injury, and autism also had four-year graduation rates below 50 percent.

Students in some disability categories had lower dropout rates than general education
students or all students with disabilities but still had low graduation rates. Students withautism, multiple disabilities, or intellectual disability had the highest rates of retention in grade 12. Under IDEA, some students with disabilities may remain in high school until age 22, which may, in combination with academic challenges, explain these higher retention rates.

This figure shows the four-year outcomes for the 2011 cohort: