Saturday, November 14, 2015

Pinned Post: Blogging Discontinued, but the conversation continues at our Yahoo Group, sign up in the sidebar.

I'm focusing my advocacy efforts at this point with NYC FAIR, a family advocacy organization for all folks with I/DD and focused on state-level advocacy around services provided by OPWDD, as well as Early Intervention, Special Education in Preschool and beyond.
     And look for us on Facebook where we have a page and a group:

Tuesday, October 16, 2012

Early Intervention Reform Redux, Accomplishing by Regulation What Wouldn't Fly as Legislation

Subject: IAC Action Alert!!!  Preserve Parent Choice in Early Intervention - Speak out against the "Arms Length" proposed regulations

Dear All:

The State Department of Health has proposed regulations preventing the same agency from providing the evaluation, service coordination, and services in the Early Intervention Program.  Parents will no longer be able to have the same agency provide both the evaluation and services to their children except in rare circumstances deemed necessary by the commissioner.

Please ask your families to send a letter to the Governor and the Department of Health speaking out on this unnecessary measure.  Click the link below to go to our website where a letter and addresses are available.  Email or printed letters are available.

The letters need to be sent prior to Monday, October 22, 2012.

Any questions, please contact me.  Thank you!

Winifred S. Schiff
Associate Executive Director for Legislative Affairs
INTERAGENCY COUNCIL of Developmental Disabilities Agencies, Inc.
150 West 30th Street,  15th floor
New York, NY  10001

This 'arms length' requirement is something I spoke about at the March 2012 Manhattan DD Council Legislative Breakfast, because it was embedded in a number of reforms that were part of the Executive Budget being presented to the NYS Legislature.  This measure was rejected as part of that process, and it is coming back again in the form of regulation at the agency level.

If your family received EI services, please write and address how a mandated jump from evaluation agency to service agency might have affected your experience.

Thursday, October 04, 2012

Early Intervention and "Embedded Coaching"

October 3, 2012

The NY City Council's Committee on Mental Health, Mental Retardation, Alcoholism, Drug Abuse and Disability Services held an oversight hearing on Early Intervention.  This typically occurs at budget time, plus annually or when a particular service issue comes to the attention of the Committee.

The Committee is interested in family input on the EI Bureau's implementation of Embedded Coaching, a service model that shifts emphasis away from direct service and toward parent training.  Some of you who are EI alumni families may remember a program called Families As Partners, which featured some of the same language and emphasis on family caregivers learning and delivering intervention techniques. 

If you have input on this subject, the Committee would welcome it via e-mail to the Committee counsel, Jennifer Wilcox, at

If you are unfamiliar with Embedded Coaching, this page on the City website contains many resources, including videos for parent training:

Video of the hearing can be found here, if you enjoy the theater of a public hearing:

The meeting led with a presentation and questioning of the NYC EI Bureau Director, Marie Casalino and one of her deputies on fiscal operations.  That discussion focused mainly on the transfer of medicaid and private insurance billing to the state office.  Councilmembers on the committee were concerned about what this change means for oversight (usually oversight goes with the flow of $), and on matters of a smooth handoff from city to state.

The representatives of Resources for Children with Special Needs and Advocates for Children each gave hard nosed, well informed critiques of the EI Bureau's adoption of Embedded Coaching.  Testimony of Nina Lublin of Resources for Children can be found here:

Testimony from Advocates for Children can be found at

Provider associations aired some concerns about the incompatibility of certain therapies to embedded coaching, and to issues in the training and roll out of this new framework.  Several providers spoke about the rate reductions the department has implemented over the last year, and the unlikeliness of success in therapy given the infrequency of certain services in IFSPs -- mandates of 60 x twice monthly were referenced.

Exactly what the City Council can do to redirect the EI Bureau's programming is not clear to me.

Early Intervention does have its own, federally mandated oversight structure, the Local Early Intervention Coordinating Council (LEICC), and that entity can always use informed input from current and recent recipient families.  Information on its meetings can be found at:

Next meeting is tentatively November 27, 2012, 10 to Noon, in Long Island City, Queens

My own testimony follows below.

My name is Lynn Decker, and I have two sons with Autism Spectrum Disorder.  Evan is now 16 and Justin is 14.  One or both of my sons were receiving Early Intervention services from late spring 1998 when Evan was diagnosed through August 2001 when Justin began preschool.  They have subsequently had a long journey through NYC special education placements and OPWDD funded programs.

So my Early Intervention experience is in some respects old news, but since around 2000 I have coordinated a parent support group with a focus on Children with Autism Spectrum.  In 2005 I created an e-mail ‘listserv’ to complement that group, and today only the listserv is active, but it has more than 300 subscribers.  This list is a valued resource for perspective, resource finding, and a chance to know others who are traveling a similar road.  Through this list, I’ve been able to stay in touch with the issues families of young children similar to my own are encountering in the EI service system.

Parents and guardians of children with ASD who live in the NY Metro area can become members of the group, which is called

New York City launched of EI services in 1993, which was mandated by the IDEA amendments of 1986, though I understand there had previously been a city program called Infant Enrichment.  By the time my household came on the EI scene, New York City was offering intensive behavioral therapies to children with Autism and related disorders under a consent decree.  So I learned early in my career as a special needs parent to appreciate that that access to things my family needed were the result of a fight by families who came before us.  So I am here today to advocate that the robust intervention program provided to my children exists for a young child diagnosed today.

I have testified elsewhere on the profound impact EI services had on our family, and though my children were not among those who responded most robustly to this type of therapy who have moved on to less restrictive settings and study at grade level, I believe that early intensive instruction made a huge difference in their ongoing engagement with the world, and in my husband's and my capacity to believe that something effective could be done to help them learn skills and be in the community without stigma.

And around the time Justin was aging out of EI, NY State issued practice guidelines for young children with autism that carried forward some of the key elements of that consent decree and favored some types, specifically ABA, over others such as Floortime, RDI, & play based therapies.  Those practice guidelines are scheduled to be revisited and revised next year, and that’s proper, as the evidence base has grown considerably over a decade.

My overarching concern about embedded coaching, the approach that is under discussion today, is one that I’ve had many times in many venues – will it be executed in New York City in a fashion that is faithful to the design, in this case crafted by a national expert, such that any reasonable person would see the connection to evidence based practice. Or, as is so often and so tragically the case, will this new way of conducting business merely be a cover for achieving fiscal targets?

I also am concerned that this sort of approach with a focus on generalization and natural contexts, will be offered essentially as a substitute for, rather than an adjunct to, previous practice.  And I’m aware that the extreme fiscal demand resulting from improved screening and awareness of Autism is a key driver of increasing service volumes and costs.  But I understand that the state practice guidelines are treated as though they have the force of regulation, so embedded coaching may not yet be reducing service to such families.

I suggest to the committee that in carrying out its oversight they ask the department to present data on total service volumes before and after the introduction of embedded coaching.

In closing, I want the committee to consider that Early Intervention is expensive, and growing in expense, because there is a growing need for such services, and to look to the growing national evidence base that early services reduce intensity of service needs down the road in the school and community as children mature.

Wednesday, November 30, 2011

SafeMinds - Autism Mercury Thimerosal - Research -

SafeMinds - Neurotoxicology Conference Initial Report

Report on 2011 Neurotoxicology Conference
From SafeMinds President, Sallie Bernard
The annual Neurotoxicology Conference took place in Research Triangle, NC on October 30-November 2. The conference title was “Environmentally Triggered Neurodevelopmental Disorders: Focus on Endocrine Disruption and Sex Differences in Autism, ADHD, and Schizophrenia.” One day of the conference was webcast and archived, courtesy of Susan Daniels of the Office of Autism Research Coordination which supports the Interagency Autism Coordination Commmittee at NIH. View here.  The conference proceedings are expected to be published in a future journal issue of Neurotoxicology.
A conference on mercury, the endocrine system and autism was conceived several years ago by SafeMinds after reading a review paper by Shirlee Tan, Jesse Meiller and Kathryn Mahaffey of the EPA, “The endocrine effects of mercury in humans and wildlife” (Crit Rev Toxicol. 2009;39(3):228-69). SafeMinds reached out to Drs. Pessah and Zoeller to move the concept forward. Dr. Cranmer, the chair of the conference, graciously adopted the theme. SafeMinds directors Lyn Redwood and Sallie Bernard attended the sessions, and SafeMinds was a co-sponsor of the event.
Findings presented at the conference on neurotoxicology provided evidence that the endocrine system is dysregulated in people on the autism spectrum and common toxins like mercury might be behind this condition. Invited scientists offered supporting data that these alterations might be reversible or prevented through a variety of interventions.
Findings of low levels of sulphate and sulphur-containing compounds like glutathione in autism may be a marker for a more fundamental alteration in selenium status leading to deficiencies in selenoenzymes, according to Nicholas Ralston of the University of North Dakota and a conference presenter. Low circulating sulphate has been a consistent finding validated in autism studies. Selenoenzymes are essential to thyroid hormone homeostasis, repair from oxidative damage in the brain and endocrine tissues, cell signalling, immune function and basic metabolic processes. Selenium is a target of mercury, which tightly binds the selenium molecule, making it unavailable for biological use and disrupting selenium biochemistry. Conversely, selenium can bind mercury, rendering it inert. Dietary selenium, especially from low-mercury deep ocean fish, can counteract the negative effects of mercury exposure. more

Thursday, March 10, 2011

Blog to Continue, End of Face to Face Meetings

“Parents of Individuals with Autism Support Group”
Sponsored by The McCarton Outreach Department
Facilitated by Peter Gerhardt, Ed.D, Nicole Pearson, M.A. & Kristin Foley, M.Ed.
The McCarton Outreach Parent Support Group is open to ALL PARENTS of individuals with autism across the age and ability spectrum. Offered as a free service to the autism community, the McCarton Outreach Parent Support Group is designed to facilitate parent-to-parent discourse and, in so doing, find solutions to some of the day-to-day problems they may face. The support group is an open forum wherein parents are encouraged to introduce topics of concern and interest at each meeting.
WHEN: 1st Tuesday of each month, beginning March 1, 2011
Future dates: April 5, 2011
                May 3, 2011
June 7, 2011
August 2, 2011
September 6, 2011
October 4, 2011
November 1, 2011
December 6, 2011
TIME: 6:30pm – 8:00pm
LOCATION: The McCarton School Auditorium (1st floor)
                     331 W 25th Street (bet. 8th and 9th ave)
                     New York, NY 10001
COST: FREE but RSVP required

Space is limited for support group meetings so please RSVP to Nicole at and you will receive a confirmation email reply. A monthly reminder will be sent and we ask that you please remember to RSVP each month.

Sunday, March 22, 2009

NYU/Silver School of Social Work Conference

Clinical Approaches for Children and Adults on the Autism Spectrum as They Transition

June 4, 2009 9:00am - 4:00pm

Kimmel Center for Student Life, 60 Washington Square South
NYU Silver School of Social Work


The conference is a continuation of conference that we have convened related to disability across the life spectrum. This is the first in a seriesthat will focus on specific categories of disability. The autism spectrum has been identified on numerous occasions as a topic that is of great interest and relevance to social workers, mental health and other professionals, educators, and parents.
Less understood, often undiagnosed or misdiagnosed, individuals on the autism spectrum face significant life challenges that impact them, their family, school, community, social interactions and the work place. Strategies for growth and successful outcomes will be highlighted.

This conference will focus on the spectrum and differential diagnosis, evidence based practices, transition points and how to plan for them and navigate through them, the role of the social worker and other professionals in the transition process, the team and how to build and sustain an effective interdisciplinary team with family and consumer partnerships. Through lectures by professionals, parents, consumers, educators and counselors, participants will be provided with current knowledge, skill building, and resources.

This conference is of value to social workers (agency based, case managers, private practice), rehabilitation counselors, educators, school counselors, advocates, occupational therapists speech therapists, and related professionals.

content summary

Introduction to the Field will address current thinking, an examination of the spectrum and what it means, evidence based practice, transition points, the role of the social worker in transitions, the team and how it works, and family and consumer partnerships. Leader: Lynda Geller, PhD

Consumer Presentation will consist of a personal narrative discussing developmental experiences from a non-speaking child to a college professor, what the journey has been, who has been involved, lessons learned, experiences, trials, tribulations, and successes. Leader: Steve Shore, EdD

Panel Presentation will explore the challenges faced in transitioning from preschool to school, through adolescence and into adulthood, navigating personal, familial, school and work systems. Facilitator: Patricia Schissel, LMSW

Techniques of Practice in the Context of Social Work
Facilitator: C. Faith Kappenberg, PhD, LCSW

Workshops will provide information about the experiences of individuals on the spectrum and the skills and techniques that are effective in maximizing care.

Individual work as well as group work and treatment teams and collaborations will be emphasized..

8:45 - 9:15 am Registration Coffee, light fare

9:15 - 9:20 am Welcome Address Eileen Wolkstein, Ph.D.

9:20 - 10:15 am Introduction to the Field Lynda Geller, PhD

10:15 - 11:00 am Consumer Presentation Steve Shore, EdD

11:15 - 12:30 am Panel Presentation Facilitator: Patricia Schissel, LMSW

Parental Perspectives:
C. Faith Kappenberg, PhD, LCSW and Veronica Acosta

Social Work Perspectives:
Lisa Bell, LMSW; Erica Levy, LMSW; Harry Nussbaum, LMSW

12:00 - 1:45 pm Lunch (on your own)

1:45 - 2:15 pm Techniques of Practice in the Context of Social Work: C. Faith Kappenberg, PhD, LCSW

2:30 - 4:00 pm WORKSHOPS

From Assessment to Delivering Services: Skills, Techniques, and Resources

Each participant to choose one workshop:

a. Applications of Cognitive Behavioral Therapy: Leader: Valerie Gaus, PhD

b. Service Delivery for Individuals Aged 3-10 Leader: Donna Mizrachi, LMSW and Patricia Mahalko, MS

c. Service Delivery for Individuals Aged 10-18 Leader: Ellen McHugh and Lisa Bell, LMSW

d. Service Delivery for Individuals Aged 19 and Above Leader: Harry Nussbaum, LMSW; Patricia Schissel, LMSW; Rachel Pollack, JD and Halley Ceglia, LMSW

e. Developing Social Skills: Leader: Lynda Geller, PhD and Rhea Hopper, MS

$90 for the day (incl. breakfast & materials) Silver School of Social Work

25% discount for Silver School of Social Work Alumni, Field Instructors, and agency groups of 3 or more.

7 CEUs will be awarded for the day.

Mailing Address:
Phone :
Degree earned:
Title: Agency:
NYU SSSW alumni Year of graduation:
Make check payable to: NYU Social Work

Mail or fax this form to:

New York University
Silver School of Social Work
1 Washington Square North, Room 205
New York, NY 10003
Attention: Priany Hadiatmodjo, Training Manager
Fax: 212.995.4172

Co-Sponsored by:

Federation Employment and Guidance Services (FEGS) and Young Adult
Institute (YAI), Asperger's Syndrome and High Functioning Autism Association (AHA)

UJA Autism Symposium

UJA-Federation Autism SymposiumPromoting Inclusion: Best Practices for Education, Vocation, and Socialization Across the Age Continuum

Details and registration

A symposium for agency executives, program directors, school administrators, and parents.

Organized in Collaboration With The Hilibrand Foundation

Breakfast and Registration (8:30 – 9:00 a.m.)
Welcome and Introductions (9:00 – 9:15 a.m.)

Keynote, Peter F. Gerhardt, Ed.D., President and Chair of Scientific Council at the Organization for Autism Research (9:15 –10:15 a.m.)

Today, families and learners with an autism spectrum disorder (ASD) are beginning to redefine the outcomes of the transition process beyond employment to include such measures of quality of life as personal satisfaction, choice, control, and happiness. This presentation will provide an overview and practical suggestions for supporting adults with an ASD label to lives of competence and quality. Particular attention will be paid to understanding social challenges that can limit individual opportunities, positive behavior support, and personal independence across multiple environments.

Q&A With Keynote (10:15 – 10:45 a.m.)

Break (10:45 – 11:00 a.m.)

Panel: Promoting Independence: Best Practices to Achieve Success in the Workforce, Institutions of higher education, and Independent Living (11:00 a.m. – 12:00 noon)

This panel will address multiple strategies to promote a successful transition toward vocation, higher education, and independent living for young adults spanning the autism spectrum. The panelists will discuss the range of skills necessary to obtain employment, higher education, and live independently, as well as the additional roles of job coaches, professional advocates, and parents in assisting with the transition process and offering ongoing support. Panelists will further provide insight as to best supporting host agencies to ensure a mutually successful experience for both the employee and employer.
Panel will feature:

* Michael Storz, M.B.A., Director of Asperger’s Syndrome Adult Transition Program and Executive Vice President of Chapel Haven, Inc.
* James Rein, President of B&R Resources, Inc
* New York State Vocational and Educational Services for Individuals With Disabilities (VESID)
o Debbie Gross, Senior Vocational Rehabilitation Counselor at VESID
o Paola Nappo, Senior Vocational Rehabilitation Counselor at VESID

Q&A With Panelists (12:00 noon – 12:30 p.m.)
Lunch (12:30 – 1:15 p.m.)

Afternoon Lecture: No More Meltdowns: Positive behavioral supports to manage and prevent challenging behaviors.: Jed Baker (1:15 – 2:00 p.m.)

Students on the autism spectrum often present with difficulty regulating their feelings and interacting socially. This presentation will describe how to handle meltdowns and design effective behavior plans to prevent these moments and reduce frustration and anxiety.

Q&A With Jed Baker (2:00 – 2:30 p.m.)

Break (2:30 – 2:45 p.m.)

Afternoon Breakout Session (2:45 p.m. – 3:45 p.m.)
Title: Social Skills across the age continuum
Presenter: Jed Baker, Ph.D., Director of the Social Skills Training Project
Description: This breakout session will address social skills and positive behavioral supports for students with Autism, Aspergers and other Social-Communication Problems. We will review strategies to motivate students to learn, ways to teach social skills, how to generalize skills into the natural setting and increase acceptance and tolerance from peers.

Title: Social Groups with LST – Language/Sensory/Technology
Presenter: Phoebe Tucker, Speech/Language Pathologist, Augmentative/Alternative Communication Specialist, and Director of the Montano Assistive Technology Center — A Division of United Cerebral Palsy Association of Southern Connecticut
Description: Learn the role of the three senses and how they effect communication outcomes. Preview software and voice-output devices that solidify concepts. Discover a pioneer intervention — virtual reality — as it relates to social interaction. Learn strategies for intervention that include the nuances of communication, critical for an older person’s success with peers and prospective employers. Win Point for Technology prizes based on your interaction during presentation

Title: Best Practices for Inclusion in the School Environment: A Case Study of an Elementary School
Presenters: Julie Cohen, Ph.D., Private Practice With Children and Families in Stamford, Connecticut, and Former School Psychologist at Parkway School Greenwich, Connecticut; and Sandra Mond, Ph.D., Educational Consultant
Description: This presentation will offer the discussion of an effective inclusion model in a school community, including techniques to support classroom and special-education teachers, paraprofessionals, parents, special needs and typical students, as well as other members of the school community, such as cafeteria workers, custodians, and bus drivers. Some of these practices are modifications in programming and curriculum, parent support groups and workshops, sibling groups, a "circle of friends," and inclusive social-skills groups. Both positive and negative experiences will be explored, and presenters will welcome input and questions.

Title: Social-Skills Instruction for Transition-Age Youth With ASDs
Presenter: Daniel Baker, Assistant Professor of Pediatrics at the Elizabeth M. Boggs Center on Developmental Disabilities, UMDNJ-Robert Wood Johnson Medical School, Department of Pediatrics in New Brunswick, New Jersey
Description: Social-skills problems are a significant barrier for many people with ASDs. This interactive breakout session will lead attendees through a process for understanding why social-skills problems are likely and then provide a “menu” of common-sense, easy ways to improve social skills. This presentation will focus on transition-age youth.

Conclusion and Evaluations (3:45 – 4:00 p.m.)