Collaborative on Health and the Environment Conference Call

Listening in to this call will provide a broad understanding of the bases of the environmental causation or catalyst view of autism.

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CHE Partnership Call Announcement - December 12

We hope you will join us for the next CHE National Partnership Call -- Rethinking Autism: Towards a Whole Body Paradigm -- scheduled for Tuesday, December 12 @ 9am Pacific /12noon Eastern time.

Autism, first identified in the 1940s, was initially believed to be an entirely psychological problem; then later, a strongly genetic disorder. Now, driven by suggestive evidence that incidence is increasing and that some children are responding to biomedical treatment, a new paradigm of autism as a set of phenotypes involving environmental modulation or triggering of genetic vulnerability is emerging. Environmental contaminants may play a significant role in some of these hypothesized phenotypes, as do gastrointestinal disorders and other conditions.

Harvard neuroscientist Martha Herbert, MD, Ph.D., will discuss the new paradigm with comments from Lee Grossman, President of the Autism Society of America and the proud parent of an autistic child, and from Michael Lerner, Ph.D., President of Commonweal. This call will be moderated by Elise Miller, M.Ed., Executive Director, Institute for Children's Environmental Health, and Coordinator of CHE's Learning and Developmental Disabilities Initiative Working Group.

Please RSVP to Julia Varshavsky at: Julia@HealthandEnvironment.org to receive call details.

Turning 5 Orientations Schedule

Citywide schedule and translation in many languages can be found at:
http://schools.nyc.gov/Parents/Essentials/Special+Education/Documents.htm

Many of the dates have passed, but most of the Region 9 ones are still to come.

District 1 November 30, 2006 9:00 am-11:00 am
PS 142
100 Attorney Street
New York, NY 10002

District 2 November 29, 2006 9:00 am-11:00 am
PS 33
281 9th Avenue
New York, NY 10001

District 4 November 27, 2006 9:00 am-11:00 am
PS 72
131 East 104th Street
New York, NY 10029

District 7 November 28, 2006 9:00 am-11:00 am
PS 49
383 East 139th Street
Bronx, NY 10454

Districts 1,2,4,7 November 28, 2006 6:30 pm-8:30 pm
Region 9 Office (7th Fl.)
333 7th Avenue
New York, NY 10001

A Gift for Your Infant, Your Peace of Mind, and Science Too

Our younger son was a subject in the "Baby Sibs" study at Johns Hopkins, and while we lost a small bet with the universe in that he also is on the autism spectrum, we gained, at least briefly, the confidence that his development was being monitored while we launched into an array of interventions for his older brother.

Like a folk "worry box", I put my concerns about baby's development away and was able to enjoy his infancy for what it was, at least in small measure. When he failed to show a wider array of normal responses at 14 months, we went to Early Intervention with a well respected referral and got a program in place lickety-split. With all that we had on our plate, we might have let baby's delays go unaddressed for quite a while, particularly since his presentation did not have the stark regression that we saw in our older son.

In the bargain, we contributed to science, as the early films of my younger son confirmed Dr. Landa's suspicion that subtle social weaknesses would be apparent even at six months, and this evidence is helping in the development and refinement of screening measures that will reliably build at least the possiblity of effective interventions for very young children.

When we participated in Baby Sibs, it was a NAAR funded study, which has now been picked up by the National Institutes of Health and expanded to more sites, including the Yale Child Study Center. They need both infant siblings of ASD kids, and control infant siblings of non-affected kids. If your family can make the trip to New Haven, I strongly encourage you to consider participating.

The announcement from Autism Speaks follows.

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Your Next Child Can Be Monitored from Birth for Vulnerabilities Associated with Autism
High Risk Baby Siblings Project at Yale looking for Participants

Autism Speaks continues to support the High Risk Baby Siblings Research Projects currently being conducted at universities around the nation. By studying the younger siblings of children with autism, clinicians are identifying risk factors associated with autism. Their goal is to lower the age at which autism may be reliably diagnosed. Early identification is key to improving the eventual outcome of children with autism and related disorders.

At the Yale Child Study Center in New Haven, researchers are studying how infants from birth to 24 months engage visually with people and objects around them. Yale is looking to expand participation in this project and is actively seeking to enroll parents of children with autism who are pregnant. If selected for the study, your baby will watch brief animated videos and look at pictures. He or she will play with toys, listen to sounds and interact with experienced professionals. Babies usually love it and parents find the feedback extremely informative. Babies who participate are monitored closely for any signs of autism from birth to 24 months, and beyond. Compensation is available for participants.

To learn more about participating in this study, please contact Irene Zilber by email at Irene.Zilber@yale.edu or by phone at (203) 785-6237. Also, to learn more about this research project please visit www.autism.fm/babysibs.

FREE!: Transition Planning, Resource Fair, Hunter GI Seminar, and Resources Series

A Gateway to Real Lives
November 14, 2006
9 a.m.-3:30 p.m.
City University of NY Graduate Center
365 Fifth Avenue,Manhattan

A conference about transition to adult life for youth with disabilities, their families and the professionals who support them. For more information, contact Jennifer Teich, Project Coordinator at 212-944-0564.

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Family & Professional Resource Fair at Church of St. Paul the Apostle (same venue as annual Camp Fair), 59th Street and 9th Avenue.
November 30, 10 AM to 2 PM
Workshops, Goodie Bags for Caregivers, and Cash Raffles.
Pick up an updated Family Support Services Directory for Manhattan Residents

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The Hunter College AUTISM CENTER

In collaboration with

Resources for Children with Special Needs, Inc.
and the Early Childhood Direction Center, Manhattan

Invite you to a seminar for parents on:
Gastrointestinal Issues and
Nutritional Considerations
Affecting Young Children on the
with Autism Spectrum Disorders

Saturday, December 2, 2006 9:30 am - 1:00 pm
Room 714 West, Hunter College
(SW corner of E. 68th Street and Lexington Avenue)

Presenters

Dr. Joseph Levy, MD, Director of the Children's Digestive Health Center and the Program in Neuro-gastroenterology at the Morgan Stanley Children's Hospital of New York-Presbyterian

Anne Roland Lee, MSED, RD, nutritionist at the Celiac Disease Center at Columbia University and an expert on the gluten- free, casein- free diet

Admission is free. To reserve a place, register in advance by leaving a message with your name and phone number at (212) 772-4822 or e-mail: cohenshirley@hunter.cuny.edu by November 27, 2006. (Child care will not be available.)

Coffee and sign-in at 9:30. Presentation begins promptly at 10.

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Resources for Children with Special Needs, Inc. Presents What?s Out There and How to Get It

2006-2007 Free Training Series

For Families and Professionals Needing Programs and Services for Children with Disabilities

Gary Shulman, MS.Ed.:212-677-4650
gshulman@resourcesnyc.org
www.resourcesnyc.org
www.resourcesnycdatabase.org

Bronx

Jewish Child Care Association 555 Bergen Ave. Bronx 10455
November 1, 2006 Education Options for Children with Special Needs 10AM-1PM
December 6, 2006 Transition from School to Adult Life 10AM-1PM
February 7, 2007 Early Childhood Services: Birth to 5 10AM-1PM
March 7, 2007 Advocacy Skills for Parents 10AM-1PM
April 11, 2007 Community Resources 10AM-12Noon

Brooklyn

Brooklyn Heights Library 280 Cadman Plaza West Bklyn. 11201
October 19, 2006 Education Options for Children with Special Needs 10 AM-1 PM
October 26, 2006 Early Childhood Services: Birth to 5 10 AM-1 PM
November 9, 2006 Transition from School to Adult Life 10 AM-1 PM
December 7, 2006 Community Resources 10 AM-12 Noon
Jan. 25, 2007 Advocacy Skills for Parents 10 AM-1 PM
March 15, 2007 Early Childhood Services : Birth to 5 10 AM-1 PM
Manhattan

Andrew Heiskell Braille & Talking Book Library 40 W. 20th St. NYC 10011
November 14, 2006 Education Options for Children with Special Needs 10:00 AM- 1
PM
November 21, 2006 Advocacy Skills for Parents 10:00 AM- 1 PM
November 29, 2006 Transition from School to Adult Life 10:00 AM-1 PM
December 12, 2006 Early Childhood Services: Birth to 5 10:00AM-1 PM
December 19, 2006 Community Resources 10:00 AM-12:00 noon

West Harlem Head Start 121 W. 128th Street, NYC 10027
March 14, 2007 Community Resources 10 AM-12 Noon
March, 28 2007 Turning 5:Transition to School Age 10 AM-1:00 PM
April 18, 2007 Opciónes Educatívas (In Spanish/En Español) 10 AM-1 PM

Resources for Children with Special Needs, Inc. 116 E. 16th St. 5th Floor NY,
NY 10003
November 15, 2006 Early Childhood Services: Birth to 5 10 AM-1 PM
January 17, 2007 Turning 5:Transition to School-Age 10AM-1PM
February 8, 2007 Education Options for Children with Special Needs 10AM-1 PM
March 7, 2007 Early Childhood Services: Birth to 5 10AM-1 PM
March 21, 2007 Transition from School to Adult Life 10AM-1 PM
March 27, 2007 Community Resources 6PM-8PM
April 12, 2007 PM Early Childhood Services: Birth to 5 6PM-8 PM

Queens
Jamaica Center for Arts & Learning 161-04 Jamaica Ave. Jamaica NY 11432
January 4, 2007 Education Options for Children with Special Needs 10:00 AM-1 PM
January 11, 2007 Advocacy Skills 10:00 AM-1 PM
January 18, 2007 Transition from School to Adult Life 10:00 AM-1 PM
February 1, 2007 Community Resources 10:00 AM-12:00 Noon
February 15, 2007 Early Childhood Services: Birth to 5 10:00 AM-1 PM

Staten Island
Staten Island University Hospital
Dietary Conference Room 2nd Floor
475 Seaview Ave. SI, NY 10305
In Collaboration with the Staten Island Early Childhood Direction Center
Dec. 5, 2006 Education Options for Children with Special Needs 10:00 AM-1PM
Jan. 9, 2007 Early Childhood Services: Birth to 5 10:00 AM-1PM
Feb. 6, 2007 Advocacy Skills for Parents 10:00 AM-1 PM
March 13, 2007 Transition from School to Adult Life 10:00 AM-1PM
April 17, 2007 Community Resources 10:00 AM-12 Noon

Creating Healthy Environments at Home and School

Developmental Delay Resources’
2006/2007 New York City Lecture Series
Tuesday evenings, 7:30-9:00 p.m.

COST: DDR members: $25 /lecture; Series: $150 Non-members: $35 /lecture, Series: $200
Lifespire Families and staff: FREE

LOCATION: Lifespire Conference Room, Empire State Bldg., Suite 314, 350 5th Ave. at 34th St.

Pre-registration is encouraged and would be appreciated. Questions? Call DDR at 800-497-0944
Go to www.devdelay.org to register online.

October 24, 2006
Environmental Toxicity In Our Everyday Lives
Speaker: Richard Statler, D.C. is a Certified Pediatric Chiropractor with DAN! training. He practices in Huntington, Long Island, where he specializes in helping families of children with special needs. He is the Health Care Director for the NY Games for the Physically Challenged.

November 14, 2006
Essential Elements of Feng Shui for Healthy Development
Speaker: William Spear is an internationally recognized authority on health and environmental issues. He is the author of, Feng Shui Made Easy which has been translated into eleven languages and is "the most user-friendly explanation of feng shui for American audiences."

December 5, 2006
Healthy Schools: What You and Your Child’s Principal Need to Know
Speaker: Mindy Pennypacker and Paul McRandle are the editor and senior research editor of “The Green Guide”, an independent research and information organization, which was dubbed the “green living source for today’s conscious consumer.”

January 30, 2007
Home Enlightenment: Health & Harmony in the Home
Speaker: Annie B. Bond is an intuitive healer and the author of several books, including, Home Enlightenment, a comprehensive guide to establishing a naturally healthy home sanctuary, a way of living and creating a home that is in harmony with the earth.


March 6, 2007
The Role of the Parent in Healthy School Food
Speaker: Annemarie Colbin, Ph.D. is an award-winning writer, consultant, lecturer, and the founder of The Natural Gourmet Institute for Health and Culinary Arts in New York City. She is an expert in the uses of food for health and is the author of Food and Healing, among other books.

April 17, 2007
Tales of Environmental Deception and the Battle Against Pollution
Speaker: Devra Lee Davis, Ph.D., MPH is a world-renowned epidemiologist who conducts research on environmental health and chronic disease. She is the author of When Smoke Ran Like Water, hailed as “simply the best book on the environment since Rachel Carson’s Silent Spring.”

May 15, 2007
The Sensory Smart Home and School
Speaker: Lindsey Biel, MA, OTR/L is a NYC pediatric occupational therapist who works with those of all ages and diagnoses including sensory processing disorder, physical disabilities, learning disorders, autism, and emotional disturbance. She is the author of Raising a Sensory Smart Child.

October Meeting: Brooklyn School, Prompt Institute Opens

Sydnee Jorgl, Board President of the Brooklyn Autism Center, visited and shared with us her journey and search for an appropriate school placement, and work to develop the Brooklyn Autism Center, with plans to open one classroom in Fall 2007. It will be an individualized ABA program, modeled on the NYCA Charter School (which is modeled on the Alpine School).

And, we found the true identity of what had been mentioned to me as the "Brooklyn McCarton school", which is Reach for the Stars Learning Center out in Borough Park, which is modeled on the McCarton School on East 83rd Street in Manhattan. Brooklyn Yellow Pages has three places by that name, but I think this is the one on Kings Highway.

Debbie reports that the PROMPT Institute, the developer of a set of Speech Therapy methods that are often very productive for our non-verbal kids, has opened its NYC Clinic. She gives it a strong recommendation and reports they still have availability as of October.

I reported on the NYC Council Education Committee's hearing on the Public Advocate's proposed regulation for reporting on special education activities. The Public Advocate's office developed Intro. 344, a proposed charter amendment, requiring reporting by the Department of Education to the Council's Education Committee on an array of measures relating to mandated special education evaluation and re-evaluation activities.

This hearing was revealing mainly of how hostile the agency witnesses seemed to be to the whole idea of making additional disclosures, and featured some sharp exchanges between councilmembers and the Department's Legal Counsel Michael Best about whether federal laws pre-empted the Council from requesting certain data. While there are certainly flaws and shortcomings to the proposed regulation, the tenor of the discussion suggested that relations between this city agency and the council committee charged with oversight are less than harmonious, and this seems to be consistent with relations between the mayoral administration and the council across a wide range of issues.

So the regulation and discussion around it may be more political theater than anything else, but it does provide an opportunity to tell the Public Advocate, Council Members, and anybody else what questions we would like to see asked. I'll have a letter on that in a future post.

Council Education Committee, Small High Schools

The small high schools issue that I mentioned at our last meeting is the topic of an excellent report from Parents for Inclusive Education and New York Lawyers for the Public Interest, titled, Small Schools, Few Choices: How New York City's High School Reform Effort Left Students With Disabilities Behind [pdf]

My long delayed letter on the September 19th Hearing on Intro 344, drafted by the office of the Public Advocate follows. I encourage you to use it in letters to your own Councimembers (particularly those on the Education Committee), so that some more useful information is included in this regulation if it does move forward. Education Committee members are: Chairperson Jackson, Arroyo, Clarke, de Blasio, Felder, Fidler, Foster, Garodnick, Katz, Koppell, Lanza, Lappin, Liu, Martinez, Recchia, Jr., Vacca,Vallone, Jr., Vann, Yassky

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November 4, 2006

Robert Jackson, Chairman
New York City Council Education Committee
250 Broadway, Rm. 1747
New York, New York 10007

Re: September 19th Hearing on Special Education Reporting Bill

Committee Members:

I am the parent of two children on the autism spectrum who have received intensive special education services through the Departments of Education or Health and Mental Hygiene since they were toddlers. Though my boys are only eight and ten years old, I consider myself a veteran special education parent, and I am active in meeting with and advising other parents on available school placements, the CSE process, and finding appropriate related services. I attended part of your September 19th hearing and wanted to share my reactions.

Overall, the reporting bill has my support, and I think the Committee is right to seek to institute regular reporting on a variety of activities of the Department in order to carry out its oversight function. The new reporting to the State Education Department that was referred to in testimony places more emphasis on student performance, as do many of the Federal reports referred to in testimony. A focus on the department’s activities is the proper place for the local legislature to be placing their scrutiny, and is the key to applying performance management to the Department.

The Public Advocate’s proposed regulation has two main weaknesses from my perspective: it is lacking in scope, through near exclusive focus on the evaluation calendar and frequency of modifications to programs upon re-evaluations. The bulk of my comments are specific and directional additions to this type of reporting.

In addition, the language of the proposed regulation is not up to date in terms of conforming with changes in federal IDEA, which was reauthorized in 2004. This latter issue was a gift to the agency witnesses testifying to the lack of necessity and or pre-emption of the regulation, and the need that the data points to be measured conform to state and federal regulations tended to undermine the case for the chosen vehicle of regulation, a charter amendment.

Overall, I strongly encourage the committee to seek the advice of Advocates for Children in better specifying this regulation, as that organization possesses a uniquely sophisticated understanding of what the agency and its systems are and are not capable of reporting from both a technological and legal standpoint. Given the history of what Advocates for Children has been able to secure through the discovery process in litigation, it appears that this agency is not above using the complexity and incompatibility of some of its data systems as a cover to avoid sharing unflattering information.

I commend the several members of the committee who took issue with Michael Best’s pre-emption position. However, another troubling statement from Mr. Best got little response from the committee: his acknowledgement that the new “small high schools” do not accept special education students in their first two years of operation. This is a blatant civil rights violation for students with IEPs, and it is well documented in the new report from NYPLI and Parents for Inclusive Education titled Small Schools, Few Choices: How New York City's High School Reform Effort Left Students With Disabilities Behind. In addition, it fuels the widespread perception that small schools will and do have a “creaming” effect, making the unreformed schools even more challenged. Particularly to the extent that any new program’s identity and culture are formed at the beginning, it is really galling to me that the new, reformed version of high school starts out excluding the disabled. Will self-contained classroom students be welcomed with open arms in year three and afforded the opportunity to benefit from the small school's unique features? I for one am doubtful.

Finally, Councilmember Lappin’s constituent, while an excellent witness, was not a very strategic one, and his tale placed the focus on issues that are either unusual or rather easy to fix. Veteran non-public school parents know that a new school, a student transfer, and inter-borough transportation are each sufficient to create transportation chaos: he described all three in interaction. My sons, who have similarly intensive needs to his, have experienced occasional blips but have overall had exemplary service from the Office of Pupil Transportation and its contractors. But more importantly, the issues that underlie his challenges in finding an effective program for his son are complicated and involve decisions made at the Department of Education and at the state and federal levels. And he is one of the lucky few who exercised the option of enrolling their child in a non-approved school, then entering into settlement talks or a hearing.

A witness more indicative of the problem would be a parent whose child has been recommended for non-public schooling by a Committee on Special Education, and granted a coveted P-1 letter that provides authorization for non-public school placement, but who cannot find a seat in such a school because there are not nearly enough. How many such students are there? I do not know because the department does not report it, but I do know there are many because I talk to quite a few, and I imagine Council members do too.

There are three specific areas of data that I believe would be helpful in the reporting regulation:

Related Service Authorizations

As a parent/consumer of Related Service Authorization services, it is my impression, confirmed by providers and other parents, that Speech, Occupational, and Physical Therapy providers are scarce compared to demand, as they are throughout the system.

At present I have RSA’s for my two sons for Speech and Occupational Therapy. We are presently scheduled for no OT because I have not found a clinic or provider with availability. The Department does do a fair job of giving parents tools to find providers, with copies of their contractor lists available at the CSE office and on the web. Right now though, some of my boys’ RSAs are useless vouchers for services I can’t source.

I hear from providers that the CSE’s also pay less and more slowly than the Committees on Preschool Special Education or Early Intervention, giving providers who contract for more than one of these an incentive to curtail their school-age caseload. My boys are also older and bigger, and providers may be less willing to serve us because they are simply more challenging.

Most troublingly, RSAs are the remedy offered to pupils who need services but are not getting them in school because there are more mandates than the available staff hours to provide them. The RSA is then a kind of release valve for lack of services in the school. This remedy is usually offered only when a child has not been provided services for a considerable time -- at least a month, far enough into the semester that it is particularly unlikely they will find an RSA provider who still has available slots.

The data that would help determine how widespread this problem is would perhaps be the number and quantity of RSA’s issued and the number and quantity of services delivered in the prior school year.

Non-Public School Recommendations and Placements

Non-Public School placements are generally said to be about 1.5% of the special education population, or somewhere around 2,000 pupils in NYC. Students in these programs are those who Committees on Special Education or Impartial Hearing Officers agreed require more specialized and intensive placements. With regard to NPS placements, the committee should know:

1) How many pupils are issued NPS approval through a “Nickerson” letter resulting from the district failing to meet deadlines or conform to due process requirements.

2) How many receive NPS recommendations from the CSE (in which the professionals agree with parents that the pupil cannot be properly served in a district program)

3) How many receive NPS as the result of an impartial hearing, but not for a “Nickerson” reason.

These three groups should be the total number of NPS pupils, and it would be useful to know the age or grade of the pupils – which are at the “turning 5” transition and which are following a year or more in a district special education program, CTT, or other placement.

Of these pupils, it would be useful to know what types of placements they have:

1) State approved non-public program (SED regulates these programs and approves changes in their enrollments)

2) “Interim emergency” list program (SED designates these programs)

3) “Carter” or non-approved private program

4) Continues to attend a “non-appropriate” district or other program in the absence of an appropriate one

5) Without placement and served at home

I believe that students without placement should be the primary concern of council members, but understanding how this array of placements affects the prospects of the most challenged of our disabled students is not possible without information about at least the number served in various settings.

In addition, the education committee would properly inquire about the number and cost of “non-approved” school placements, starting with the number of such pupils thought by the Dept. of Education to be attending, and the number and amount of settlements, as well as the percentage of tuition settled for.

I’ve been told that Carter placements shift the share of support to the city (over and above the costs of the settlement and hearing process) while state-approved NPS placements shift the share of expense to the state because the NPS pupils are deemed “excess cost” pupils in the reimbursement formula while Carter placements are not. City lobbying for NPS program creation or expansion might therefore be strategic. And Carter placements are not to be uniformly opposed either, as they are one of the few means of creating seats to addresses previously unmet needs. It is not a very equitable vehicle, but it does ultimately build capacity in a system not characterized by responsiveness to complex needs.

Augmentative Communication & Assistive Technology

Each of my non-verbal children has been evaluated and recommended to receive an augmentative communication device. These evaluations were requested in winter of 2005 and performed in April 2006. But the devices were not ordered until September 2006 and they have yet to be delivered. Why the delay? I have come to understand that orders for assistive tech are held until the new budget year. This seems like the type of problem that is solely about lack of fiscal forecasting and budget planning. Shedding a little sunlight on this area of special education operations might bring needed services to many children in a more timely way.

These three areas of operations represent specific opportunities to use data to better understand what is and is not working in special education, and are ripe for improving transparency, equity, or performance. All of this data should also be broken down by age, relevant geographic and available socio-economic categories.

Thank you for your attention and commitment to improving the quality of special education programs in New York City.

Lynn Decker
[address]

cc: Public Advocate Betsy Gotbaum
Councilmember Gerson

Guide to NYC Schools from Teachers College Press

Released in April, this guide has gotten mixed reviews from our support group members. The listing of 33 schools is descriptive of each, but most are not right for our ASD kids and it is far from comprehensive. It does have listings beyond schools, though, and can be very useful for finding other professionals, like Neuropsychs and related service providers.

What it tells about the process for getting into schools is accurate, as far as it goes, but incomplete like the schools included and suffers a little from not having a point of view -- the process in NYC has plenty wrong with it from the perspective of transparency, and everything wrong from the perspective of equity.

If you do want a copy of your own, buy from Amazon through the link above and the support group will see a little revenue.

If your search needs to be comprehensive, better to look at the Resources for Children with Special Needs Directory, now available online at http://www.resourcesnycdatabase.org/ The database also has more detail on each entry, but only if you access it from a public library branch or another organization that subscribes to the database.