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Friday, February 5, 2016

New Study of Wandering

The Politics of Autism discusses the problem of wandering, which is the topic of legislation before Congress and the legislatures.

A release from the Cohen Children's Medical Center:
A new study by researchers at Cohen Children's Medical Center of New York (CCMC) suggests that more than one-quarter million school-age children with autism spectrum disorder (ASD) or other developmental disorders wander away from adult supervision each year.
More than 26% of children with special needs in the study had wandered away from a safe environment within the past 12 months, say the researchers, with public places being the most common location for it to occur. Children between the ages of 6 to 11 were more likely to wander than those ages 12 to 17.
Appearing Thursday in the online scientific journal PLOS ONE, it is the first published study to report the prevalence of elopement, or wandering, using a nationwide sample of school-age children with developmental disabilities, such as ASD, intellectual disability (ID), or developmental delay (DD).
"Wandering has become a greater concern; said Andrew Adesman, MD, chief of developmental pediatrics at CCMC and senior investigator of the study. "Not only does it pose a significant risk to the safety and well-being of children with developmental disabilities, but fear of wandering can be a daily source of stress and anxiety for parents of affected children."
In 2013, a 14-year-old Long Island boy with autism wandered out of his classroom and past a school security guard. The teen's body was found several months later on the shore of the East River.
"As the prevalence of autism spectrum disorders in the United States continues to rise, there is a need to better understand the behaviors that may compromise the safety and well-being of these children," said Bridget Kiely a research assistant in the division of developmental and behavioral pediatrics at CCMC and principal investigator in the study.
Using data from a 2011 Centers for Disease Control and Prevention survey of parents and guardians of more than 4,000 children ages 6 to 17 with special health care needs, researchers divided the children into three groups: those with ASD only; ASD with ID and/or DD; and just ID and/or DD.
Researchers found that children with ASD (with or without associated cognitive delays) were more likely to wander off than children with cognitive impairment but no ASD. Across all groups, wanderers were more likely to not realize when they are in danger, to have difficulty distinguishing between strangers and familiar people, to show sudden mood changes, to over-react to situations and people, to get angry quickly, and to panic in new situations or if change occurs.
"The kids who are most likely to wander are the kids who are least likely to respond appropriately to police or rescue personnel – potentially further jeopardizing their safety;" added Dr. Adesman. "First responders need to recognize that children or young adults with an autism spectrum disorder may over-react to some well-intentioned interventions and may be unresponsive to simple commands or questions"
In terms of prevention strategies, the researchers also found that caregivers of children with ASD and ID/DD were more likely than those in the other two groups to use fences, locks, alarms, electronic tracking devices or other measures to prevent wandering.

Push for Iowa Insurance Mandate

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

Iowans supporting insurance coverage for autism met at the capital Thursday, including a delegation from Siouxland.
Blue T-shirts and puzzle pieces were set up in the Capitol rotunda to catch the eye of lawmakers.
A bill introduced by Republican Rep. Ron Jorgensen of Sioux City would require insurance companies to cover autism treatment.
As it stands now, often that treatment isn't covered - even for doctor recommended care.
Autism advocate Josh Cobbs from Sioux City says, "A lot of our families do have to relocate at times or they go without services. So that's a pretty desperate place to be in.As well as all of our surrounding states and 42 other states in the country have passed similar legislation. So really Iowa is a little bit behind the curve when it comes to serving this type of population."
Cobbs is the father of a 15-year-old boy with autism. He's been working on this bill for 10 years and hopes this could be the year it actually gets passed.
The group "Autism Speaks" is asking Iowans to sign an online pledge to support autism insurance reform and to contact their lawmakers to suppose the initiative. You can view that online through this link.

Problems in Illinois and Ohio

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

In Springfield, Illinois, Dean Olsen reports at the State Journal-Register:
Families of Illinois children with autism are reporting declines in their children’s communication skills and heightened anxiety after the ongoing lack of a state budget prompted drastic reductions in services statewide.
Springfield’s Autism Clinic at The Hope Institute for Children and Families has heard from parents who are seeing their children regress socially after losing services that were made more affordable to low-income families through a $4.3 million grant to Hope’s statewide Autism Program.
Hope hasn’t received any of that money because of a state budget impasse that began July 1, the first day of fiscal 2016, more than seven months ago.
“The parents we talk to are frustrated,” said Clint Paul, president and chief executive officer of Springfield-based Hope Institute. “They feel the state has turned their back on them and doesn’t care. If a child is not receiving services, there’s a very good likelihood that their child will regress.” 
Several Central Ohio families are still hurting after the Elijah Glen Center closed almost two months ago.

The center offered long-term treatment for 12 to 18-year-olds with moderate to severe autism.
There is hope of the center re-opening. Franklin County Residential Services is stepping in to find a more long-term solution.

However, parents are still facing the issue of finding the money themselves to pay for treatment.

The Public Children Services Association of Ohio wrote a letter to Senator Randy Gardner, the Chair of the Joint Legislative Committee on Multi-System Youth.

The stakeholders asked Senator Gardner to focus on decreasing or eliminating the need for custody relinquishment in order to access services.

Thursday, February 4, 2016

Race, Ethnicity, and Autism

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

 The Office of Special Education and Rehabilitative Services, U.S. Department of Education, has just released the  37th Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2015.

One table presents the percentage of students ages 6 through 21 served under IDEA, Part B, within racial/ethnic groups, by disability category: Fall 2013.  The drafters of the reported calculated the percentage by dividing the number of students ages 6 through 21 served under IDEA, Part B, in the racial/ethnic group and disability category by the total number of students ages 6 through 21 served under IDEA, Part B, in the racial/ethnic group and all disability categories, then multiplying the result by 100.

The autism results are worth a close look:

Asian .........................................19.2
Two or more races.........................9.3
Native Hawaiian/Pacific Island.....6.2
Black/African American................6.0
American Indian/Alaska Native.....4.7

Insurance in Oklahoma

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

Steve Shaw reports at KWTV in Oklahoma:
State lawmakers are considering a bill that would help thousands of families dealing with Autism.

House Bill 2962 was introduced in a House Insurance Committee earlier this week. Supporters say Oklahoma is one of only seven states that don’t make insurance companies cover autism treatments.

Dr. Scott Singleton is Clinical Director at Good Shepherd Catholic School in Oklahoma City. All of the students at the school either suffer from Autism or another neurological disability. He said passing this legislation is a no-brainer.
“It costs about $5,000 a month if you don’t get early intervention, if you get early intervention it drops that number down to about $3,000 a month,” Dr. Singleton. - Oklahoma City, OK - News, Weather, Video and Sports |

Wednesday, February 3, 2016

IDEA Stats: Huge Percentage Increases in Florida and Mississippi

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

From Office of Special Education and Rehabilitative Services, U.S. Department of Education, 37th Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2015
How have the percentages of resident populations ages 6 through 21 served under IDEA, Part B, that were reported under the category of autism changed over time? 
Exhibit 22. Percentage of the population ages 6 through 21 served under IDEA, Part B, reported under the category of autism, by year and age group: Fall 2004 through fall 2013

  • In 2013, a total of 8.2 percent of students ages 6 through 21 served under IDEA, Part B, in the 52 states (“All states”) for which data were available were reported under the category of autism. More than 10 percent of the students served in Minnesota (13.8 percent), California (11.1 percent), Connecticut (11.0 percent), Oregon (11.0 percent), and Maryland (10.3 percent) were reported under the category of autism. However, less than 4 percent of the students served in Montana (3.5 percent), Puerto Rico (2.4 percent), and Iowa (1.1 percent) were reported under the category of autism. 
  •  In 2008, a total of 5 percent of students ages 6 through 21 served under IDEA, Part B, in the 52 states (“All states”) for which data were available were reported under the category of autism. 127 
  • The percentage of students ages 6 through 21 served under IDEA, Part B, who were reported under the category of autism was larger in 2013 than in 2008 in 50 of the 51 states for which data for both time periods were available. The sole exception was Iowa, in which 1.1 percent of the students served in both years were reported under the category of autism. 
  • The percent change for 39 of the 50 states in which a larger percentage of the students ages 6 through 21 served under IDEA, Part B, were reported under the category of autism in 2013 than in 2008 exceeded 50 percent. Moreover, a percentage increase of more than 100 percent was found in Mississippi (149.3 percent) and Florida (117.3 percent).  [see pp. 125-126 of the report]

Tuesday, February 2, 2016

An Incident in Marina

 Claudia Meléndez Salinas reports at The Monterey Herald:
The incident that landed an autistic teen in the criminal justice system took place on July 14, when Paul Gordo pushed a woman to the ground while experiencing what his father said was a panic attack.
But for Steve Gordo, the father of the severely disabled 18-year-old, the problem started much earlier, when the Monterey Peninsula Unified School District stopped providing his son with the special education he needed.
And when the district arranged for a teacher, the setting chosen to provide instruction ­— a public library — led to the behavior that resulted in the incident, Steve Gordo believes.
Ken Carlson reports at The Modesto Bee:
The Gordo family waited for two months before Paul was charged with felony assault with an enhancement for causing great bodily harm.
They had hoped that Superior Court Judge Pamela Butler would reduce the charges at the preliminary hearing this month, but the felony remained in place and a misdemeanor was added for a person pushed inside the library. At the close of the hearing last week, Paul was ordered to stand trial.
Steve Gordo said it’s clear the woman should be made whole and his insurer has tried to contact her family.
He said his son panicked in the library and was running to take refuge in their car. Because of his inability to make decisions and care for himself, a court appointed the parents as conservators for Paul last April.
“When Paul has a meltdown, its fight or flight. He’s not thinking clearly,” Steve Gordo said. “There is documentation in his school file that says this behavior is related to his disability.”
More than 10,000 people have signed an online petition in support of the defendant. [Jill] Escher of the Bay Area autism society urged the district attorney in a December letter to drop the criminal prosecution.
From The Autism Society of the San Francisco Bay Area:
Autism Society San Francisco Bay Area
PO Box 249
San Mateo, CA 94401
Dean D. Flippo
Monterey County District Attorney
230 Church St # 3
Salinas, CA 93901
December 5, 2015
Re: Request to Drop Charges in State v. Gordo, Case No. SS151439A
Dear Mr. Flippo:
We are writing to express our astonishment and grave concerns over your election to instigate a felony charge against a young man with autism named Paul Gordo. Based on the publicly available facts, it is undisputable that this mentally disabled manʼs impulsive actions were features of his very significant neurodevelopmental impairment, and not a product of intent to harm as required by law.
Autism is a pervasive neurodevelopmental disorder that results in serious functional, social cognitive, sensory, behavioral and intellectual limitations. In Paulʼs case, these pathologies are clear and significant enough to warrant eligibility in the stateʼs Developmental Disability Services system, and for a court to find him so profoundly incapable of self-care and independent decision-making that he requires a conservatorship.
Paulʼs extensive disabilty in fact places him among the small subset of autistic students who require residential treatment placement. California, however, offers no such placements past the age of 18. High-support-needs young adults like Paul who require these nonexistent residential treatment placements are often provided inadequate services in the community, essentially set up to fail.
Moreover, Paul did not elect to be at the library where the events occurred. He did not elect to delay treatment for his behavioral issues. He did not choose a “victim.” He did not seek to cause harm. He was placed at the library by adults charged with making such decisions, and treatment options were in the hands of others. Charging this young man is akin to blaming someone for unknowingly spreading an infection when no adequate treatment was available.
Autistic people like Paul lack the ability to accurately perceive the world around them, comprehend social norms, or maintain executive functioning we take for granted every minute of our day. Outbursts often result from anxieties or sensory dysfunction hitting a brain that simply cannot process the complex mix of exogenous factors or figure out how to remedy a problem in the moment. Panic, flight, aggression and maladaptive behaviors, although not planned or desired, may be the result.
Severe autism cases in California have skyrocketed over the past three decades, from about 3,000 in the early 1980s to more than 80,000 today. (Source: Department of Developmental Services). The population of young adults such as Paul with DDS- eligible autism will double in the next five years and triple over the next ten. Research is slowly revealing that this surge is likely due in part to “de novo,” or new, mutations from parental gametes, resulting in dysregulation of early brain development.
Criminalizing autism behavior as a felony would not only put this young man on the road to three strikes/life in prison but put others across the state in similar jeopardy. The remedy to protect the public from impulsive autism acts such as Paulʼs is adherence to the Lanterman Act (Welf. & Inst Code Sec. 4500 et seq.) and the federal IDEA, through which those with developmental disability are entitled to a system of services and supports to enable them to live and learn safely and as appropriate to their needs.
Here, the system clearly failed Paul, and now he is supposed to pay the price? We urge you to immediately desist from this perversion of the intent of our criminal laws, not to mention any sense of common justice. The DA is not representing The People in this case.
It also seems imperative that the DAʼs office receive training about autism, and if we could be of assistance in that regard, we would, with gratitude, be at your disposal.
Very truly yours,
Jill Escher President
CC: Thomas McMahon, attorney at law