Thursday, September 14, 2006

"Town Hall" and NYC Council Hearing on Special Education Reporting Bill

Public Advocate Betsy Gotbaum and members of the City Council's Education Committee have prepared a charter amendment requiring reporting of the number of special education students, referred, evaluated, and placed, as well as the number of days between those events. All of us who have been frustrated getting information about the system within which our children are served are likely to cheer this measure.

And in a larger sense, it is exciting that local and state pols are taking a look at special education. Looking at the text of Intro 344, the City Council's Education Committee proposal, it seems they think the problem is accountability, the watchword of the season. Intro 344 does shine some sunlight on referral, evaluation, and placement, and on student outcomes to a slight degree. I do wish it addressed student outcomes and program quality more directly, but the disclosures it requires of the Dept. of Education will create positive incentives and information that can be used for further advocacy.

Text of Int. 344 can be read at:

On Monday 9/18 at the Adam Clayton Powell, Jr. State Office bldg. from 6:30 to 8:30 Public Advocate Betsy Gotbaum and Assemblyman Keith Wright will host an Education Town Hall that includes a panel of distiguished guests such as Council Members Jackson and Dickens, UFT President Randi Weingarten, and many others.

On Tuesday 9/19 at 10a.m. in Council Chambers at City Hall the Education Committee will hold a hearing on proposed Special Education legislation, Intro-344.
6:30PM to 8:30PM
Adam Clayton Powell, Jr. State Office Bldg.
163 West 125th St

Sponsored By: Public Advocate Betsy Gotbaum & Assemblyman Keith Wright

Featured Guests and Panel:
Manhattan Borough President Scott Stringer
Council Members Inez Dickens and Robert Jackson
Carmen Colon, Assc. of NYC Education Councils
Dawn Brooks-DeCosta, Harriet Tubman Learning Center
Tim Johnson, Chancellor's Parent Advisory Council
Dr. Danielle Moss Lee, Harlem Educational Activities Fund, Inc.
Matthew Lenaghan, Advocates for Children
Ellen McHugh, Parent to Parent of NYC
Randi Weingarten, UFT President
for more information visit or call (212)669-7200

Share your questions, thoughts and experiences with our panel of elected officials and education advocates



(NOTE VENUE CHANGE from 250 Broadway)



Int 344 - By the Public Advocate (Ms. Gotbaum) and Council Members Brewer, Clarke, Fidler, Koppell, Martinez, McMahon, Nelson and Recchia Jr. - A Local Law to amend the New York city charter, in relation to requiring the reporting of statistics relating to students receiving special education services.

September Meeting Report: RDI, Photography, a new school in Brooklyn

Our guest this month was a new to town ABA therapist who does some interesting social and arts programming in the mix. Her name is Karen Rusten, and her blog is here. Karen has had some training in RDI, so we asked her to talk about that, because many people have had questions about it. And, we didn't know about the workshops on RDI coming up at the JCC, which are a good way to get a taste of it beyond the book but short of going to the weekend parent trainings.

Karen gave us some examples of kids she's worked with who gained skills with ABA, but did not have access to things like talking about their feelings. She considers it a helpful expansion or complement to ABA, not a competitor. But Karen really wanted to talk about her use of photography, both as a avenue of expression for our kids and means of finding out what our language impaired kids are finding interesting in the environment. She described working with an adolencent boy by allowing him to take photos and bringing the prints back to the next session and asking him to describe what he saw. This fostered more expanded and complex expressive language from him than usual, and she is interested in developing the method more systematically. Finally, she is a skilled photographer herself who is working on a portrait series of ASD kids.

We heard about a new ASD school planned for next fall in Brooklyn Heights, and may have a guest about that next month. It will be modeled on the NYCA Charter School.

Big recommendation on Susan Senator's book and blog at

And a big recommendation for Mom-NOS, another blog by an ASD mom. She's at

And one last plug, for a funky visual arts site that lets anybody at make an image that looks like a Jackson Pollock. I am using this to try to get my bigtime scribbler to enjoy "scribbling" on the screen, too.

Seminars, Programs, and Conferences, Oh My!

This week my inbox is overflowing with notices of fall seminars, programs, and workshops on ASD for the coming season. Without trying to compete with the wonderful Schaefer Autism Report, here are some things to consider for your calendar:

How to Write and Develop Social Stories™ with Carol Gray at the Parkside Institute

Thursday, October 19, 2006
5:00 p.m. to 7:30 p.m.

Speaker: Carol Gray is the President of The Gray Center for Social Learning and Understanding, a non-profit organization serving people with autism spectrum disorders (ASD). She is an internationally respected author and speaker with over 20 years experience as a teacher and consultant working on behalf of children and adults with ASD. In 1991, Ms. Gray developed Social Stories™ , a strategy used worldwide with children with ASD.

A Social Story™ is a process that shares accurate social information through a special writing style and format that is consistent with the learning characteristics of children and adults with ASD. This is an introductory presentation for anyone wanting to learn to write and develop a Social Story™ according to the new 10.0 defining criteria and guidelines, and provides an excellent review for anyone who may already be familiar with the approach.

Please send a check for $35 payable to The Parkside School, 48 West 74th Street, New York, NY 10023, ATTN: Christine Hayden to reserve your seat. Provide your name, address, phone and e-mail contact with payment. For questions, please call (212) 721-8888 x155 or email

Autism and Advocacy: A Conference of Witness and Hope

27 October 2006, 9 a.m. - 4:30 p.m.
Fordham University, McNally Amphitheater
140 West 62nd Street, New York City

Conference is free and open to the public. ~ Registration is required:
By email: or by telephone: 718 817 0662

Autism Spectrum Disorder is a neurodevelopmental disability that has been the subject of extraordinary interest and controversy in recent years. Amid often heated debates over causation and treatment, the depth of commitment and service witnessed daily in the autism community merits celebration: our many challenges invite further reflection. This conference features the varieties of advocacy practiced with and by persons with autism, especially those forms of advocacy grounded in moral and religious traditions. The presentations offered at this event are intended to encourage additional reflection and discussion by members of the audience. We hope to promote greater engagement with autism advocacy as an integral component of work for social justice.

OPENING ADDRESS Timothy Shriver, Chairman, Special Olympics
Kristina Chew, Ph.D., Saint Peter's College
Salvatore C. Fererra, Ph.D., President, Xaverian High School, Brooklyn, NY
James T. Fisher, Ph.D., Fordham University
William C. Gaventa, M.Div. Elizabeth M. Boggs Center on Developmental Disabilities, UMDNJ-Robert Wood Johnson Medical School
Rabbi Dr. Geoffrey Haber, Temple Emmanu-el, Closter, NJ
Bruce Mills, Ph.D., Kalamazoo College
Mark Osteen, Ph.D., Loyola College in Maryland
Gloria Pearson-Vasey, Author, The Road Trip: Life with Autism
Kassiane Alexandra Sibley, Co-Author, Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum
Lance Strate, Ph.D., Fordham University
Mary Beth Walsh, Ph.D., Caldwell College

Morning Session: Advocacy and the Traditions
Speakers will share their experience in advocacy for persons with autism in liturgical and educational settings. While they represent various traditions and approaches, this work is grounded in theological convictions on the dignity of the human person and a "spirituality of presence" for autistic persons within communities of worship and learning. Moderator: Rev. Bill Gaventa, M.Div.Speakers: Rabbi Dr. Geoffrey Haber, Mary Beth Walsh, Ph.D., Salvatore C. Ferrera, Ph.D.

Afternoon Session: Advocacy & Self-Advocacy in the Formation of Persons and Community
A condition commonly associated with social isolation and withdrawal, the experience of autism has generated innovative forms of community-building through the gifts of advocacy and self-advocacy. Speakers will treat their work in collaborative service-learning settings; in literary partnerships and the "blogosphere;" in new models of residential community; and in pioneering models of self-advocacy. Moderator: Lance Strate, Ph.D.Speakers: Kristina Chew, Ph.D., Bruce Mills, Ph.D., Gloria Pearson-Vasey, Kassiane Alexandra Sibley

Jewish Community Center in Manhattan on First Signs, Special Needs Panels, RDI Expert, and More

JCC in Manhattan at 76th & Amsterdam has special needs recreation programs, babysitter referrals, support groups for special needs parents, sibling programs, Sunday programs, screenings of "Normal People Scare Me," and tons more. Take a look at

SPECIAL EVENT: Could It Be Autism: A Guide for Parents by Nancy D. Wiseman
Nancy Wiseman will be speaking of her findings and presenting the concepts in her book, Could It Be Autism, which draws on her own stories and the latest research to help parents detect autism and find solutions. Her book serves as a tool to determine whether a child has difficulties that demand immediate attention. Wiseman helps navigate through treatments with physicians and experts, and offers much inspiring hope. Wiseman, founder and president of the acclaimed organization First Signs Inc., has been interviewed by many of the leading news sources as one of the leading experts on early detection of autism.
Thu, Feb 16, 7 pm, $12/$18

Second Annual Special Needs Panels
Section 1: Navigating Special Education Services for Your Child

Thu, Sep 28
7:00 PM - 9:00 PM, $20/$25

Join our distinguished panel to discuss the issues and options available to help you become the best advocate for your child and family as you negotiate the systems of the special needs world. Our panelists will address different types of interventions and related services, differences in school environments—both public and private— and the ways to access funding. Panelists include Dr. Marilyn Agin, Gary Mayerson, Esq., Dr. CeCe McCarton, Dr. David Salsberg and Dr. Davida Sherwood. Moderated by Vanessa Markowitz, Esq.

Section 2: Sibling Relationships: When One is Different
Thu, Dec 7
7:00 PM - 9:00 PM, FREE

This panel discussion with adult siblings who grew up in families with a developmentally challenged child will focus on the impact, feelings and experiences that contributed to shaping their lives and will be a valuable resource for gaining insight into how to support the non-disabled family members.

An Introduction to Relationship Development Intervention - RDI

This workshop will introduce Relationship Development Intervention, RDI®. This approach to intervention, developed by Dr. Steven Gutstein, is for children who have Autistic Spectrum Disorders. It confronts the core deficit of autism, i.e., the establishment of a dynamic system of information processing. This approach helps children develop relationships with other people by enhancing emotion, sharing, social referencing, social coordination, declarative language, flexible thinking, relational information processing, foresight and hindsight. RDI is both developmentally based and systematic in presentation. Presented by Dr. Nancy Schwartz, certified RDI consultant. For parents and professionals.

Fri, Oct 27
9:30 AM - 1:30 PM
$100.00 - Member, $125.00 - Non-Member

Location: The JCC in Manhattan, 334 Amsterdam Ave. at 76th St. (Program room assignments will be available at the JCC Customer Service Desk, in the lobby of the Samuel Priest Rose Building.)
For more information, or to register, please call 646-505-5708.

Sinergia Metropolitan Parent Center Fall 2006 Education Advocacy Series

  • The Rights of Parents
  • The Special Education Process
  • Early Intervention
  • Advice and Strategies for Parents

Tuesdays and Thursdays from 10 to 1 PM, October 3, 5, 10, 12, 17,& 19
134 West 29th Street, 4th Floor

Refreshments will be served, Simultaneous Spanish translation available upon request

Register by phone or e-mail: Contact Godfrey Rivera
212-643-2840, ext 320

Ackerman Center for Families Offers Series for Parents of Young Children With Special Needs

Wednesdays, October 25; November 1, 8, 15; 9:30-11 AM

Facilitator: Judy Grossman, DrPH, OTR, FAOTA, is the Associate Director of Ackerman's Center for the Developing Child and Family, an occupational therapy and public health educator, and a consultant to community agencies. She has conducted early intervention and special education policy studies, held a number of academic appointments, (NYU, SUNY-Downstate Medical Center, Yale School of Medicine) and published an presented in the areas of family resilience, parenting, mental health consultation and best practices in special education. Her private practice in family therapy is located in NYC and Westport, CT.

Fee: $200.00

This discussion group is being offered to help parents cope with personal and family stress associated with having a child with special needs. The purpose it to share the experience with other families, increase social support, expand health coping strategies, and promote satisfying co-parenting relationships and sense of competence in the parental role. Some of the topics will include:
  • Perceptions and reactions to the child's disability
  • Impact on the marital relationship, siblings, other family members and daily routines
  • Impact on your role as parents
  • Thinking about the future

To register or for more information, contact Brenda Nerenberg, 212-879-4900, ext 108 or e-mail

Eden II Programs/KeySpan Foundation Autism Workshop Series and Kickoff Celebration

KeySpan Foundation, in conjunction with The Eden II Programs, is proud to offer a series of free workshops designed to educate on topics related to autism spectrum disorders.

Please join Bob Keller, Executive Director, KeySpan Foundation and Joanne Gerenser, Executive Director, Eden II Programs to celebrate as we kickoff this Autism Workshop Series.

When: October 4, 2006

Where: The Vanderbilt at South Beach
300 Father Capodanno Blvd.
Staten Island, NY 10305

Time: 6:00 p.m. - 7:30 p.m. – Presentation by Dr. Joanne Gerenser
“Autism Intervention and Best Outcomes: What Does the Research Tell Us?”
7:30 p.m.- 9:00 p.m. – Cocktail Party

Space is limited. For more information or to RSVP, please contact Marissa Bennett at 516.937.1397 X217 or by email,

[Note: Workshops are free but may be in a different location.]

10/19/06 — Overview of Autism
11/16/06 — Introduction to Discrete Trial Instruction
12/4/06 — Promoting Speech and Language
1/12/07 — Overview of Autism and ABA
2/16/07 — Managing Challenging Behavior
3/12/07 — Beyond Discrete Trial Instruction
4/16/07 — Managing Challenging Behavior
5/10/07 — ABA in Less Restrictive Settings
6/1/07 — Overview of Autism and ABA
7/19/07 — Utilizing Video and Computer Technology in Autism Education

Workshop Series funded by KeySpan Foundation

Special Camp Fair on Saturday, Jan. 27, 2007

Parents and caregivers of children and teens with disabilities can plan ahead for summer with the wealth of information offered at the 22nd annual free Special Camp Fair on Saturday, January 27, 2007 from 11 AM to 3 PM. at the Church of St. Paul the Apostle, 405 W. 59th Street NYC (Entrance to Fair on Columbus Ave. near W. 60th St.) . The Fair is presented by Resources for Children with Special Needs, Inc., (212) 677-4650.

Representatives from 70 New York City day camps and sleepaway camps in the northeast will be on hand to help parents and professionals plan productive summer experiences for children with disabilities. The Fair will also feature information on travel programs, remedial education programs, volunteer and job opportunities and early childhood programs. Spanish and sign language interpreters will be available.

Visitors to the Fair will receive a free copy of the Camps 2007 Guide. The Camps 2007 Guide (publication date January 2007) is also available by sending a check for $25 plus $8.00 postage and handling to Resources for Children with Special Needs, Inc., Dept. PR1, 116 E. 16th St., 5th Floor, New York, NY 10003.

NY State Regents on Aversives

You may have seen news items on the proposed use of aversive stimuli policy being considered by the New York State Board of Regents, which have mainly followed one of two hysterical themes:
1) concerned parent of high management needs student who has only been safe to himself and others when schooled at the Judge Rotenberg School in Massachusetts, where some students are subject to electric shocks and other harsh aversives, doesn't know where else to send their child if new aversives policy is not made permanent
2) Regents' new policy will allow all special education students statewide to be subject to aversives including strangling, electric shocks, and confinement in windowless rooms without review

Concern about the new policy has led to the Regent's deferring a final decision on the policy at their September meeting, but extending the emergency regulation so that Rotenberg students can stay where they are. Meanwhile, a federal judge struck down the regulations' application to the Rotenberg Center at the request of a group of NY parents of students there.

So what is a calm but concerned parent of a special education student to think?

You could read the entire proposed regulation, availalable at

When I did, I came away thinking there was so much review of the procedures by state ed -- called by the acronym VESID in much of this debate -- of the procedures to be used for each child, that the necessity of such measures would be required to be shown by the proposing school officials, and that permission was likely to granted only when less restrictive alternatives had been exhausted.

But disability advocates insist that this will not be the case, and that regulations that require student level review by VESID in a range of other subject areas are regularly granted on a rubber-stamp or blanket basis.

Here's a summary of what the New York Civil Liberties Union has to say about their efforts to block the regulation:

And their testimony to the Regents regarding the regulation gives a good summary of the legal arguments they would use if the regulation was made final:

Elsewhere on this blog you'll find a collection of resources on Positive Behavioral Intervention and Supports (PBIS), an approach that as a spectrum parent I wholehartedly support and try to implement in my own home. On the other hand, I am also a parent who walks her 8-year-old with a leash, a measure made necessary by his history of running into busy streets. It gets me funny looks, but I continue to have a little boy instead of a road pizza -- my experience tells me this is a necessary tactic, even as we continue to work on his compliance and safety awareness so that it may someday not be needed.

And my concern is compounded by the fact that our school does use manual restraints to correct that child's flopping on the floor and eloping from the classroom. But before they implemented a well-documented protocol to limit his freedom of movement and stand him up from the floor, they reviewed it in detail with my husband and me. If restrained, he has the opportunity for freedom every 30 seconds, and he is never left unattended in a time out because the condition for ending it is that he is quiet. In short, they follow principles laid out in the regulation if it were ideally carried out. They tried and found wanting less restrictive responses, and they trained all staff and briefed parents, obtaining consent, before implementing. (All this happened before the regulation, and I'm frankly not clear how they will handle it differently in the future.)

Now I realize this very happy situation is only possible because his school has an appropriate staffing ratio to deal with behaviors such as his, and other schools, including others we have attended, are very unlikely to be able to meet such a standard of program excellence and professional ethics.

So I find myself wanting to embrace the NYCLU position because it will make schools everywhere actually employ PBIS, as my son's does, which is precisely why they use manual restraints in limited ways with strict review procedures. I see this as just like me and my leash, which keeps my boy alive while I work actively on building his skills so as not to need it. But, I do want programs that serve my kid to have access to aversives (with reviews and limits such as those in the regulation) when less restrictive measures fail, which they sometimes do in spite of everyone's best efforts.

I think this is what happens when we are stuck between the world we want to have, that policy makers to often speak as if we do have, and the one in which everyone except the lucky few in fact lives.