Thursday, May 19, 2005

NYC4A Open House Report

I promised an account of the open house for the NYCA charter school, and here it is. I did not ask staff from the charter school to fact check this report, so any errors are my own.

There were about fifty people at Tuesday's open house for the new autism charter school, so my plan to nag about outreach seemed less important and I took a pass on being argumentative. If half that many came in the evening, I think there will be a healthy pool of applications.

Their presentation involved a discussion of how the NYCACS came into being, by Ilene Lanier, who is the board president, followed by a discussion of educational methods and tactics by Caroline Ryan, the education director, who has/is a BCBA. The executive director, who is not an educator but rather an administrator and probably fundraiser (at least as far as I could tell) spoke about the admissions process. I did not catch his name.

The program will be straight ABA -- not verbal behavior, social stories, or other common methods. Related services will not be provided in school, and there will not be a sensory gym, OT room, or pull-out speech. Speech and OT activities may be part of a student's discrete trials program, or group activities. Families may seek RSA's for such services and obtain them outside school hours. School support for such RSA's with the CSE was somewhat vague though -- they will not oppose them, but seeking them will be based on speech, OT, or PT evals, and the school will have none of those types of professionals on staff. Any home ABA programmers that families use are welcome to attend team meetings for coordination of home and school programs.

Ultimately, they hope to run a school that will serve ages 5-21. But charters are issued for a period of 5 years, and in each classroom, at least in special education, it is possible to have an age range of up to 4 years. Thus the age range at for current admissions is 5-9 and the age served under the charter is 5-14 (or 9 + 5). In five years when the charter is up for renewal they will be seeking to serve 5-19, etc.

They discussed 4 levels on which there will be accountability in the program: their internal standards for staff performance, family feedback, independent consultation, and NY City and State government regulations. Students who are appropriate for the program will be eligible for the alternate assessment rather than standardized testing. What the criteria will be for charter renewal remained a little unclear to me, but I suspect it will involve showing student progress within the alternate assessment framework.

This year they will open school year with 4 students, and add eight more, one about every 5 weeks throughout the year. In year two they will add eight more for a total of 20, and in year 3 eight more for a total of 28. Not clear whether the year 2 and 3 admissions will be for September or rolling.

Location will be in a public elementary school somewhere in Manhattan. If anybody knows a public elementary school with room to spare this year and more space to give up in year 2 and 3, I'd like to hear about it. In any case, they can or will not identify the host school at this time.

Student selection for this year will be from the applications received by June 1, and qualifying applications require a medical diagnosis of autism or PDD-NOS, and an IEP with a placement or recommendation for segregated setting. A student who is now in an inclusion setting or has been recommended for one is not likely to be a candidate for this program. There will be sibling preference, as this is required for all charter schools. How exactly that will fit in the lottery framework was not detailed.

The ratings on the student profile will be used to rate qualified applicants as 1 (severe), 2 (severe - moderate) and 3 (moderate). A student with an overall rating of 4 is probably not an appropriate candidate for the program. That student profile will not be used for any instructional purposes -- it is meant only to divide the applicant pool into three subgroups so that the student body will have a range of functional levels and at least some peers for each student. So the odds of being selected will vary depending on the number of applicants in each sub-pool.

Precisely how the first 4 seats will be distributed among the three sub-pools was not clear to me, but a total of 4 will be chosen from each of the three sub-pools, and every qualified applicant (see criteria above) will get a notification of their lottery number by mail, sometime after July 1. Those with numbers 5 to 12 will also get an estimated date of admission. Those above the first 12 will be on a waiting list through the year. All those on the waiting list will need to re-apply for the following year.

Oddly, the application documents don't seem to be downloadable from the website anymore. Not cool. If you still need one, call them at 212-759-3775. Applications for the school lottery are currently being accepted and must be received by Wednesday, June 1, 2005 at the office of The New York Center for Autism Charter School, 214 E. 52nd Street, Third Floor, New York, New York 10022-6207.

Website is

Tuesday, May 10, 2005

Environment & Disability Nexus

Keep an eye out for news coverage of this event. This is a conversation that is long overdue, and the proper basis for what I think might be some powerful alliances between environmentalists and disability advocates. One nitpick is that I'd like to see a greater emphasis on the iatrogenic (meaning introduced by medical care) component of environmental exposures, of which thimerosal is the biggest.

But I applaud this effort and am looking forward to more in the same vein.

Press release of Environmental Media Services follows
The Relationship Between Chemical Exposures and Incidence
Of Learning and Other Developmental Disabilities

Sponsored by
Senators Lautenberg, Clinton, DeWine, Jeffords, Kennedy, Kerry & Snowe

Groups Call for a Fully Funded National Children’s Study and
Chemical Regulation Policies That Better Protect Children

Washington, DC – Learning and developmental disabilities are estimated to affect one in six children in the U.S. under the age of 18, and scientists report that the rates appear to be increasing. The National Academies of Science estimates that 25 percent of developmental and neurological deficits in children are due to the interplay between environmental and genetic factors, and research indicates that the developing fetus and children are particularly vulnerable to chemical exposures. Of the more than 80,000 chemicals currently registered in the marketplace, only 12 neurotoxicants have been thoroughly studied. Exposure to these chemicals in the womb and throughout childhood can damage the developing brain and contribute to learning and developmental disabilities.

The health impacts of these exposures also have economic costs. A recent study conducted by the Mt.Sinai School of Medicine estimates that for mercury exposure alone, the cost to society is about $8.7 billion annually. These societal costs include significant expenditures for special education. In 1999-2000, the United States spent $77 billion for special education services to students with disabilities, which is almost a quarter of all spending on elementary and secondary school education that year. According to the U.S. Department of Education, special education spending continues to increase every year.

Experts at the briefing will address subjects including: the connection between chemical exposure and developmental disabilities; why the developmental disabilities community is concerned about chemical exposures; autism rates and the personal experience of mother of an autistic child; the promise of the National Children’s Study; and ways we make chemicals child-safe.

Bruce Lanphear, MD, MPH – Cincinnati Children’s Hospital Medical Center

Joe Meadours, Alabama Mental Health and Mental Retardation Department

Laura Hewitson, PhD – University of Pittsburgh School of Medicine and autism researcher/mother of an autistic child

Leonardo Trasande, MD, MPP – Mt. Sinai School of Medicine

Lynn Goldman, MD, MPH – Bloomberg School of Public Health, Johns Hopkins University

Congressional briefing on the latest scientific understanding of the relationship between chemical exposures, and learning and other developmental disabilities.

Tuesday, May 10, 2005, 10:00- 11:30am.
406 Dirksen Senate Office Building

Sponsored by the American Association on Mental Retardation, Learning Disabilities Association of America’s Healthy Children Project, and the Collaborative on Health and the Environment’s Learning and Developmental Disabilities Initiative.

Saturday, May 07, 2005

M.I.N.D. study on biomarkers

Srong evidence of alterations in blood samples of children with autism
06 May 2005   

Scientists report strong evidence of immune and protein alterations in blood samples of children with autism, raising hope for an early diagnostic blood test.

Offering a new and exciting direction in the effort to develop a diagnostic test for autism in infancy, scientists from the UC Davis M.I.N.D. Institute presented new evidence today indicating that components of the immune system and proteins and metabolites found in the blood of children with autism differ substantially from those found in typically developing children.

Investigators at the Institute believe the discovery, announced today at the 4th International Meeting for Autism Research (IMFAR) in Boston, could be a major step toward developing a routine blood test that would allow autism to be detected in newborns and treatment or even prevention to be initiated early in life.

Over the last two decades parents, educators, scientists and pediatricians have been alarmed by a dramatic and baffling rise in the prevalence of autism, which now affects as many as 1 in every 166 children. But diagnosing autism, a brain disorder that leaves children in apparent isolation from their families and communities, is currently accomplished through a series of behavioral observations that are not reliable until a child is between 2 and 3-years-old.

"Finding a sensitive and accurate biological marker for autism that can be revealed by a simple blood test would have enormous implications for diagnosing, treating and understanding more about the underlying causes of autism," said David G. Amaral, research director at the UC Davis M.I.N.D. Institute and one of the co-authors of the paper presented at IMFAR. "Not being able to detect autism until a child is close to 3-years-old eliminates a valuable window of treatment opportunity during the first few years of life when the brain is undergoing tremendous development."

Amaral along with pediatric neuropsychologist Blythe Corbett and other M.I.N.D. Institute colleagues took blood samples from 70 children with autism who were between 4 and 6 years old and from 35 children of the same age who didn't have the disorder. The samples were then analyzed by a biotech company, SurroMed, LLC, Menlo Park, Calif., which has developed technology that can identify differences in the number and types of immune cells, proteins, peptides and metabolites in small amounts of blood.

The study has generated an enormous amount of data and M.I.N.D. Institute researchers say it will take months before all of the information has been fully evaluated. But initial findings clearly demonstrate differences in the immune system, as well as proteins and other metabolites in children with autism:

-- The antibody producing B cells are increased by 20 percent in the autism group

-- Natural killer cells are increased by 40 percent

-- More than 100 proteins demonstrated significant differential expression between the autism and typically developing groups

-- Other small molecules (metabolites) also show many differences

"This is an important pilot experiment, a proof of principle," said Amaral. "From these results we think it is highly likely that there are differences we can detect in blood samples that will be predictive of the disorder, though we are still some years away from having an actual diagnostic blood test for autism. Scientists have long suspected there were distinct biological components to autism but the technology needed to reveal them has only recently become available."

Future research studies need to be done to confirm the findings in a larger group and with younger children. For example, researchers might take blood samples from newborns and then see if the results predicting autism are later confirmed by a behavioral diagnosis. Other studies would also use bioinformatics approaches to narrow down the number of proteins or metabolites that would need to be assayed to show the strongest link to autism.

"Discovering an early diagnostic test is an important focus of research," said Amaral. "There is a growing view among experts that not all children with autism are 'doomed to autism' at birth. It may be that some children have a vulnerability-such as a genetic abnormality-and that something they encounter after being born, perhaps in their environment, triggers the disorder. Studying the biological signs of autism could lead to new ways to prevent the disorder from ever occurring. And even if it can't be prevented, intervening early in life-ideally shortly after birth-could greatly improve the lifetime outlook for children with autism, particularly those who now respond poorly to therapy initiated when they are three or older."

The UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute is a unique collaborative center for research into the causes and treatments of autism, bringing together parents, scientists, clinicians and educators. For further information, go to