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CT FEAT NEWSLETTER Vol. 5, No. 1 Spring/Summer 2002 Families Helping Children Reach Their Full Potential |
READ ALL ABOUT IT IN THIS ISSUE:
Treatment and Education
Advocacy and Support
United On All Fronts.
Promoting Excellence — The UCE Consumer Advisory Council.
Resource Reviews
Learning Opportunities
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The contents of this newsletter are, unless otherwise indicated, the property of Connecticut Families for Effective Autism Treatment, Inc. (CT FEAT) and is copyright protected. It may be used only with attribution. Copyright © 2002 CT FEAT, Inc. |
And More
UNITED ON ALL FRONTS!
(Robert F. Shea, Jr., Esq.)
The recent attempt by Connecticut Special Education Hearing Officers to ban non-attorney advocates and out-of-state attorneys from representing families at due process hearings was met with an effective wall of resistance, made up of CT FEAT parents and other advocates in the educational and legal sectors.
In January, our friend Attorney Gary Mayerson notified the CT FEAT Board that the Special Education Hearing Officers had adopted an internal policy stating that only Connecticut-licensed attorneys could represent a party in the special education hearing process. It was clear that such a policy would impose unfair and difficult restrictions to families pursuing due process. Lawyers with expertise in special education are extremely scarce, leading families to look to out-of-state specialists in some cases.
The Board immediately took the position that such a policy was inappropriate and counter to the right to counsel as described in the Individuals with Disabilities Education Act (IDEA). The Board then networked through CT FEAT parents and friends, providing information on this issue and on contacting state legislators, Attorney General Blumenthal, Education Commissioner Ted Sergi and the Connecticut Bar Association.
Within days, CT FEAT parents and supporters generated close to 50 letters, e-mails and phone calls to state officials, expressing strong objection to the hearing officers’ policy. At the same time, Attorney Mayerson filed a federal court lawsuit in Bridgeport
federal district court on February 6, 2002, challenging the policy on both the out-of-state attorney issue and the non-attorney advocate issue.
In mid-February, State Senator Kevin Sullivan (D-West Hartford) contacted CT FEAT to let us know that he received our letters and e-mails and that he had expressed his concern about the policy to the Department of Education. State Senator Judith Freedman (R-Westport) also contacted the Department, at the request of CT FEAT parents in her district. In addition, some Connecticut newspapers covered the story about the hearing officers’ policy and published very thoughtful and persuasive comments from parents.
Sure enough, on February 27, 2002, the Department of Education issued a statement essentially rescinding the hearing officers’ policy. This is a great outcome and our success is owed to the combined efforts of CT FEAT parents and friends, Attorney Mayerson and Senators Sullivan and Freedman.
Thanks and congratulations to CT FEAT parents and friends for being ready, willing, and able to unite on all fronts for our children, including the legal front, the political front and the media front.
(Editor’s Note: For additional details on this topic please see Attorney Gary Mayerson’s article beginning on page 14 of this edition of the CT FEAT Newsletter.)
vDid You Know?
Un Trabajo En Progreso
Guia de Tratamiento ABA en Español
One of the leading ABA teaching manuals and program curriculum guides, A Work In Progress (Ron Leaf & John McEachin, 1999) is now available in Spanish. Read about Esperanzas Para El Autismo: Un Trabajo En Progreso in the Recommended Reading section of the CT FEAT web site at www.ctfeat.org.
BOOK REVIEW
Teaching Playskills To Children with Autistic Spectrum Disorders By Melinda J. Smith, M.D.(Reviewed by Sue Frost Bennett)
For a normally developing child, learning to play is effortless and fun. Unfortunately, this is not the case for a child with autism.
Learning to play appropriately with toys and with other children is an invaluable skill. In addition to the sheer pleasure they provide, play skills pave the way for enhanced social relationships. Another benefit to teaching age appropriate play skills is that they are often effective in replacing self-stimulatory behaviors.
Yet, play skills can be tremendously difficult to teach to children with autism.
Parents and educators often immerse children in playgroups, hopeful that they will somehow absorb some benefit from these experiences. Generally, this approach leads to disappointing results and, as the children get older, play skill goals are often simply dropped.
In contrast, applied behavior analysis (ABA) techniques employ direct and systematic approaches to the teaching problem. ABA has proven to be an effective method to teach these crucial skills to children with autism.
Dr. Melinda Smith’s son began an ABA program in early 1998. Part of his program targeted play skills, beginning with imitation and then moving steadily toward the goal of independent imaginative play.
(Continued on page 19.)
BOOK REVIEW
Sleep Better!
A Guide to Improving Sleep for Children with Special Needs
By V. Mark Durand, Ph.D.
(Reviewed by Donna Cohen)Many children on the autism spectrum, like mine, experience sleep difficulties of varying degrees. The resulting sleep deprivation, on the part of both children and their parents, can exacerbate tremendously the stresses already associated with parenting a disabled child.
Prominent behavior analyst, Mark Durand, Ph.D., wants us all, kids and parents alike, to Sleep Better. His book is a practical guide to making that dream a reality.
I found this book to be both interesting and easy to read. It provides step-by-step instruction on how to identify the specific behaviors you wish to change, and a good number of strategies that can be used to develop positive sleep behavior.
The book is sectioned into three main areas of interest. These are The Nature and Problems of Sleep, Assessing Sleep Problems, and Strategies for Change.
Section one is a basic overview of the behavior and function of sleep. "Sleep professionals are just at the beginning of the search for knowledge about sleep and how it affects us" Durand writes, "but it is becoming clear that sleep serves several essential roles in our lives" including many areas of physical and mental functioning. For example, research suggests that sleep is critical for learning and for memory function. "Somehow during sleep, the brain processes information and makes it accessible to us later."
(Continued on page 19.)
VIDEO REVIEW
Improving Play Skills
(Reviewed by Rosanne Craemer Shea )
Improving Play Skills, the instructional video recently released by the New York Families for Autistic Children (NYFAC), provides useful information about teaching appropriate play skills to children through applied behavior analysis. Families and educators will find this video a helpful tool.
The video first describes the various stages of play development: object manipulation (isolated play), parallel play, cooperative play, reciprocal play, group games, and pretend play. A video clip follows each definition and highlights the goals of each play stage.
The next part of the video shares ideas for designing and implementing successful play programs to meet these goals. It emphasizes the use of task analysis, effective prompting, shaping, and reinforcing, all while incorporating the child’s interests. It also covers the use of timers, scripts, video modeling and picture schedules.
The video’s lecture format, interspersed with clips showing how a particular method is implemented, effectively explains and demonstrates precise techniques that can be put into practice immediately.
Unfortunately, all the footage is shot "at the table." This is probably because often times it is easier to begin teaching difficult tasks at the table and then move them into natural settings. Nevertheless, footage showing how to progress to various environments would have been helpful.
At the very end of the video, there is an excerpt from
(Continued on page 20.)
Promoting Excellence
The UCE Consumer
Advisory Council
(Rosanne Craemer Shea)
The new Consumer Advisory Council of the University of Connecticut A. J. Pappanikou Center for Excellence in Developmental Disabilities recently held its first meeting.
University Centers for Excellence (UCEs) were established under President Kennedy in 1963 as part of a federal effort to coordinate training, research, community outreach and dissemination of knowledge, in order to address the needs of people with developmental disabilities.
On April 2, seventeen newly-appointed Council members, including CT FEAT Board member Roberta Daversa, met with UCE staff members and director, Mary Beth Bruder.
The Council members represent various advocacy groups and state agencies that provide services to people with developmental disabilities. The purpose of the Council is to make recommendations to the UCE for strategic planning of future funding.
These formal recommendations will be included in next year’s application for funding beginning in 2003.
The vision of the University of Connecticut’s UCE is to "promote interdisciplinary collaboration across academic and community settings ... and serve as a resource for public policy development, through dissemination of research findings and information about best practices."
In keeping with that mission, the UCE focus is principally on evidence-based provider training and research, with a lesser emphasis on direct services.
CT FEAT is honored to be included on the Council. We look forward to supporting the efforts of the UCE in promoting research-based approaches to meeting the needs of people with autism and other developmental disabilities.
(Editor’s Note: The A.J. Pappanikou Center for Developmental Disabilities will host its 1st Annual Connecticut Family Support Conference Family Support: What Is It and How Can I Get It? Friday, May 31 through Saturday, June 1, 2002. Please see the listing for this event on page 12 of this edition of the CT FEAT Newsletter.
For more information about the University of Connecticut’s A. J. Pappanikou Center for Excellence in Developmental Disabilities, visit their web site at www.uconnced.org)
vABA Treatment Research:
Does Quality Predict Outcome?
(Kathleen Dyer, Ph.D., CCC-SLP, BCBA)
In 1997, Tom Parvenski, Director of River Street School, started to receive requests from parents and school districts to provide Applied Behavior Analysis (ABA) services for young children with autism. He responded to this demand for services by starting the River Street Autism Program (RSAP). Since that time, the program has grown tremendously, and the River Street Autism Program is now serving over 50 children from 25 school districts.
Because of the diverse nature of the districts that are served by the RSAP, the "ABA services" varied, depending on the needs of the districts, available funding, and family preferences. The services varied in the components considered essential for effective treatment. These components include (1) a behavioral emphasis, with empirically derived procedures, (2)
intensity of 30-40 hours per week, with duration of at least 2 years; (3) family participation, and (4) therapy delivered and supervised by individuals trained in behavior analysis.
We were interested to see if there was a relationship between the number of essential components a child received and the overall quality of life outcomes for their families. Therefore, we sent questionnaires to 20 families who had children who began treatment between the ages of 3-5 years old and had received services for three years.
The questionnaires were aimed to determine how often children were interacting with friends and peers and engaging in extra-curricular activities. Questions were also designed to assess the quality of life of the whole family, including the child’s leisure/recreational engagement with the family, and family vacation time. In addition, there was a question to determine how often the child’s parent(s) engages in leisure/recreational activities alone. Finally, we were interested in determining if problem behaviors were restricting the families’ ability to go out into public places.
We compared the results of the questionnaires to the number of quality treatment components that the child received in his or her program. We found that there was, in fact, a correlation between quality of life outcomes and the quality of ABA programs. Children whose programs had the highest number of essential components spent more time 1) with friends, 2) in extracurricular activities; 3) in leisure/recreational activities with family; and 4) on family vacations. Further, the parents spent more time in leisure/recreational activities without their children.
For children who had family participation as one of their components, there was much higher participation in community outings. Specifically, problem behavior did not often prevent them from going out into public as much as they liked.
This was in sharp contrast to the programs that did not have family participation, where nearly half reported that problem behavior severely limited public outings. It appeared that when the families had learned to provide behavioral support, there were considerably fewer problem behaviors, thus increasing the family’s access to the community. In addition, with the children learning communication, socialization, and peer observation skills, inclusion with other children in community activities was increased.
We are grateful for all the families who are doing the very hard work of providing treatment for their children, and for generously responding to our questionnaires. As we learn about what is essential in ABA treatment programs, we can disseminate this information to families and treatment providers, who are making critical decisions about how to provide the best services possible for children with autism.
(Editor's Note: Dr. Dyer is the Clinical Director of the Locust Street School in Hartford.)
v
LACASA Takes Off With ABA Pilot Program
Group Plans conference on May 18
(Roberta Daversa)
Last summer, a group of people in the Litchfield area got together to envision how families and professionals could work together to improve the sparse conditions of effective supports and services for individuals with autism spectrum disorders and their families.Now the parents and professionals who make up the Litchfield County Autism Spectrum Association, Inc. (LACASA) are busily pursuing their vision in interesting ways.
One is their participation in a pilot program called
e-ABA. In January, five members of LACASA began a four-course internet-based curriculum in early behavior intervention run by The University of Massachusetts Medical School, Eunice Kennedy Shriver Center.
E-ABA is designed to provide accessible education in the delivery of positive behavior intervention. The development of the series of 15-week courses, the pilot run and evaluation with intended students (parents, teachers and others) is funded through a U.S. Department of Education grant.
LACASA recently collaborated with the Northwest Hills Educational Consortium for School Improvement, the Hartland Public Schools, and The Education Connection to secure funding through the State Department of Education for a free training conference planned for May 18, 2002. (For details please see page 10 of this edition of the CT FEAT Newsletter.)
The group is also working with the University of Connecticut and various State agencies to develop and implement training on effective autism services. Their hope is that this will evolve into a long-term university-based training program.
LACASA President Diana LaRocco is pleased with the support the group has received. "Local schools, legislators, local and state agencies have all been at the table at one time or another and have expressed a keen interest in supporting the focus of the group."
That’s exactly what she and the other members of
LACASA had envisioned.
LACASA meetings are open to all family members and professionals who wish to work toward improving services for individuals with autism spectrum disorders. For more information please contact Diana J. LaRocco, dlarocco@snet.net, Karen Neag, mikekks@mail2.nai.net or John Hudson, 860- 489-2790.
ve-ABA _Distance Learning
Opportunity for Free Undergraduate e-Learning Sequence in Behavioral Intervention in Autism
The federally sponsored Learning Anytime Anywhere Partnership Program is organizing another cohort for the e-ABA pilot program.
The series of internet-based instructional programs on applied behavior analysis will be provided at no charge to volunteer learners who can commit to investing 8 — 10 hours per week.
The program is designed to help parents, caregivers, teachers and other professionals become more proficient in teaching children with autism in areas of communication, socialization, academics and self-help.
Course objectives are based on the input of established experts in the ABA/autism field. Courses include "Introduction to Behavioral Intervention in Autism" and "Positive Teaching and Behavior Reduction Strategies in Autism".
Enrollment is limited.
Each course will be coordinated by an experienced instructor, a doctoral level expert in ABA, serving as a coach, facilitator and resource person.
Instructors include Dr. Beth Sulzer-Azaroff and Dr. Jennifer Crockett.Contact Bazaroff@comcast.net for information on program details and registration.
vIEP
Institute for Educational Planning
New CCCD Subsidiary Offers
Diagnostic and Evaluation Services
(Suzanne Letso)
CCCD is very pleased to announce the establishment of a new subsidiary program, the Institute for Educational Planning (IEP). IEP will provide diagnostic testing services, conduct educational placement evaluations, and assist with the development of educational service plans and data collection systems for children with various special education needs. In addition, IEP will provide consultative speech and language services.
While IEP will provide services to children, adolescents and adults with various special education needs, our staff has specific training and expertise in autism and related disorders and behavior analysis.
IEP will operate from its own dedicated facility on 243 Broad Street, Milford, Connecticut. We are now scheduling appointments for diagnostic and educational evaluations beginning in June.
(Editor’s Note: If you would like more information about IEP, please contact Suzanne Letso at the Connecticut Center for Child Development, (203) 882-8810, or e-mail at letso@cccdinc.org).
v More Sleep! Please!The following is the "Help Desk" column by Bobby Newman, PhD, BCBA, in Science in Autism Treatment, The Newsletter of the Association for Science in Autism Treatment; Winter 2002, Vol. 3, No. 2.
Dear ASAT: My child isn't sleeping through the night. She tantrums in her room when we put her to bed, or winds up in our bed. What can we do?
I'm afraid I don't have a specific answer to your question. I wish I could give you a book that says "for all perseverative behavior, do this" and "for all self injurious behavior, do this." There's no such book, and anyone who tells you differently is selling something. There is no substitute for a good functional analysis of the behavior in question. Still, we can start with gathering information you need to proceed.
Does your child ever sleep through the night? Under what circumstances? Is your child happy in her bed if you are in the room? Are bathroom and other bodily needs (hunger, thirst) satisfied by bedtime? Does your child go to bed and then come out, or does she not even go in at all? Does your child sleep during the day? How many hours does she generally sleep a night? Is it possible there is too much sleeping during the day, or that might you be putting her to bed too early?
If your child is sleeping a lot during the day, she may not be sleepy at night. Cut out the afternoon naps, and the problem may be solved. Consult your doctor regarding how much sleep your daughter should need at her age. Classical conditioning may also play a role. It is never a good idea to have someone go to bed who is not going to fall asleep any time soon.
The bed should be a conditioned stimulus for sleep. If there is no hope of the child being sleepy, being in bed is not conducive to the bed becoming a signal for sleep. You may have a "house rule" that says to stay in your room after a particular hour, but you can't make someone sleep.
If it isn't something so obvious, we have to begin our "detective work." Does the child ever sleep through the night? If so, when? Can it be that your house is too stimulating at night? Are televisions or radios going? Are there loud conversations and a lot of laughing? Is it possible the child is missing potent reinforcers when she goes to bed? If so, access to those reinforcers needs to be curtailed until the "habit" is broken.
Often, children have difficulty with the lying down in the first place. Is the child anxious? If so, you might need to stay with the child and then fade yourself away from the setting. This can be done by sitting with the child until she falls asleep at first, and then systematically fading your presence. You might sit further and further from the bed and then eventually not be in the room at all, or progressively stay for less and less time each night. The key is to fade yourself gradually.
In extreme cases, the ritual must simply be broken by having the child stay in his/her room and redirected back if they leave. The child may tantrum within the room, so think ahead and "child proof." Be careful with this. Don't undertake this type of plan unless you are prepared to carry it through all the way, or you will intermittently reinforce the behavior. Inconsistency on our part breeds persistence in our children.
In all cases, remember the basic rule of reinforcing what you want to see. Don't expect that behavior will occur just because you said so. When you see good examples of the behavior, reinforce heavily.
I recommend Mark Durand's book titled Sleep Better! A Guide to Improving Sleep for Children with Special Needs for more on systematic ways to improve your child’s sleep habits.
(Editor’s Note: Bobby Newman, PhD, is author of the book, When Everybody Cares: Case studies of ABA With People With Autism.
It was reviewed in the Spring/Summer 2001 edition of the CT FEAT Newsletter.) vQuality Indicators of a Good ABA Program
Fall 2002
CT FEAT will sponsor a presentation by Kathleen Dyer, Ph.D., CCC-SLP, BCBA, and colleagues.
Check the CT FEAT web site for further details, as they become available.
v
CT FEAT PARENT
RESOURCE MEETINGS
CT FEAT’s Parent Resource Meetings provide parents with an opportunity to network with each other in a confidential setting.The meetings take place three times a year, in the fall, winter and spring, on Sunday afternoons from 1:30 to 3:30 p.m. at the Rocky Hill Congregational Church on 805 Old Main Street, in Rocky Hill, CT. The first half-hour is dedicated to orienting newcomers. This is followed by a presentation (speaker, video, etc.) or discussion pertaining to treatment or advocacy issues.
The next meeting will take place in September. Please check the CT FEAT Hotline, web site or Listserv for the exact date. The only requirement for participation is that parents agree to respect each other’s confidentiality.
Please visit the CT FEAT web site , or call the CT FEAT Hotline (860-571-3888), to request directions, check for storm cancellations, or obtain further information. Also, please note that these meetings are for parents only and that there is no childcare available.
v May 10 — 11, 2002, Atlantic City, NJIssues in Autism: Twenty Years of Progress
Sponsored by the New Jersey Center for Outreach and Services for the Autism Community (COSAC), this year’s program promises an impressive collection of presenters and workshops. (This annual conference is regarded as one of the best ABA learning opportunities in the Northeast and is known to sell out early.) www.njautism.org
May 18, 2002, Litchfield, CT
Making a Difference: Current Approaches to Promote Learning, Communication & Social Development in Children and Youth with Autism Spectrum Disorders
Keynote address by Roger Frant (State Department of Education) Workshops on ABA and other autism interventions. Presenters include Richard Fleming, Ph.D., Ruth Eran, Judy Itzkowitz, others. Designed for parents, teachers, administrators, para-educators, & therapists. Continuing Education Units (CEU's) available for educators. Lunch & refreshments provided. All costs covered by a grant from the State Department of Education. Sponsored by the Northwest Hills Educational Consortium for School Improvement, the Litchfield County Autism Spectrum Association, Inc., Hartland Public Schools and The Education Connection.
Contact Joyce DeAngelo at 860-567-0863.
May 18, 2002,
Rochester, NYEffective Treatments for Autism
Sponsored by the Center for Autism and Related Disorders (CARD) of Rochester
Keith Amerson, M.S. Sébastien Bosch, Ph.D., BCBA, and others
$30/person pre-registration
$40/person on-site registration
Phone: (585) 377-6590
FAX: (585) 377-6605
May 21, 2002, Plainview, NY (Long Island)
Solving the Relationship Puzzle
Relationship Development Intervention
Opening address by noted behavior analyst Bobby Newman, Ph.D. BCBA, followed by a workshop for parents and professionals by Steve Gutstein, Ph.D. on Relationship Development Intervention (RDI) for young people with autism and Asperger syndrome. RDI is a systematic method of teaching the subtleties of social and emotional behavior. Additional information about RDI can be viewed at www.connectionscenter.com.
http://elijafoundation.freeservers.com.
May 24 —28, 2002,
Toronto, CanadaThe Annual Conference of the Association of
Behavior AnalystsThe target audience for this conference is ABA professionals. But many parents describe this giant annual gathering of the international ABA profession as the absolute best ABA conference imaginable. Given its comparatively sophisticated level, non-
professionals probably should have some prior experience in the field. Numerous workshops on autism treatment by leading ABA experts.
www.wmich.edu/aba/convention/program.htm.
June 3-4, 2002, Princeton, NJ
Eden Institute Presents Professional Training in Behavioral Teaching Strategies
Topics include: Overview of Autism, Teaching Techniques, Communication, Curriculum,
IEP Development, and more.
edenservices.com
609-987-0099
June 7, 2002, Princeton, NJ
Eden Institute Foundation's Eighth Annual Princeton Lecture Series: Affecting the Research and Service Agenda
This year's guest lecturers are Richard Foxx, Ph.D, Elizabeth Gould, Ph.D. and Sandra Harris, Ph.D.
Contact Joni Truch at (609) 987-0099 or
edenservices.com.
June 8 & 9, 2002, Plainview, NY (Long Island)
Applied Behavior Analysis & Verbal Behavior Teaching Functional Communication to Students with Autism
Christina Burk, BCBA
A two-day workshop on teaching verbal behavior to students with autism. More information about ABA and verbal behavior is available at:
www.ChristinaBurkABA.com.
$50/person
http://elijafoundation.freeservers.com
June 14, 2002, Reading, PA
Autism Society of Berks 3rd Annual Conference Behavioral Intervention for Children with Autism and Related Disabilities
Featuring Bridget Taylor, PhD. and Rick Kubina, PhD. Dr. Taylor is founder the Alpine Learning Group in Paramus, NJ, a non profit corporation dedicated to providing state-of-the-art educational and intervention services to individuals with
autism. Dr. Kubina is an Assistant Professor, at The Pennsylvania State University, Department of Educational and School of Psychology and Special Education. Dr. Kubina specializes in curriculum and
fluency issues.
http://www.autismsocietyofberks.org
610-736-3739
July 8-9, 2002, Dedham, MA
2-Day PECS Training Workshop
Scott Helsinger, M.S., BCBA, &
JoAnne Matteo, M.S., CCC-SLP
888-732-7462
edimaio@pecs.com
www.pecs.com
July 24 — 25, 2002, Plainview, NY (Long Island)
Verbal Behavior Workshop #4: Hands-on Training for Tutors & Therapists
Conducted by Cherish Richards, BCABA &
Holly Kibbe, BCABA
Pre-requisite: Introductory VB Workshop#1 with Vince Carbone, Ed.D., BCBA & must have some experience teaching children with autism within an intensive teaching program. Limited to 20 participants
http://elijafoundation.freeservers.com.
September 26-27, 2002, Latham, NY
2-Day PECS Training Workshop
Tony Castrogiovanni, Ph.D., &
JoAnne Matteo, M.S., CCC/SLP
edimaio@pecs.com , www.pecs.com
November 8, 2002, White Plains, NY
Ninth Annual Conference of the Foundation for Educating Children with Autism
Keynote address by James Partington, Ph.D., BCBA. For further information, call FECA at 914-941-3322 or write to them at FECA, P.O.Box 813, Mt. Kisco, New York 10549.
December 3-4, 2002, Long Island, NY
2-Day PECS Training Workshop
Andrew S. Bondy, PhD., &
Lori Frost, M.S., CCC/SLP
888-732-7462
edimaio@pecs.com
www.pecs.com
v
CCCD LECTURE SERIES CONTINUES
The Connecticut Center for Child Development's (CCCD) highly regarded annual lecture series continues with talks scheduled for two evenings in June and July. Interested individuals are invited to attend this series at CCCD, free of charge, on a first-come, first-served basis. Seating is limited and early reservations are recommended. Call Holly Sickles, at extension 10, to make reservations.
June 5, 2002, 7:00 P.M.
Sibling Relations
Leslie Michniewicz, M.S., BCBA
Megan McCarron, M.S.
July 10, 2002, 7:00 P.M.
Increasing Spontaneous Language for Children with More Advanced Communication Skills
Patricia Fitzsimons, M.S., BCBA,
Marcella Yeon, M.A. &
Megan McCarron, M.S.
CCCD is located at 925 Bridgeport Avenue, Milford, CT 06460; Phone: (203) 882-8810; Fax: (203) 878-9468; Email: info@cccdinc.org
. vOTHER PRESENTATIONS
OF INTEREST
MAY 21
, 2002Taking the First Step: Building A Bridge - Transition to Adult
Workshop given by the Connecticut Parent Advocacy Center. Recommended for parents of middle and early high school children. Participants will learn what is mandated by IDEA '97 in the area of transition. Andrea Deshefy of CPAC will provide information on vocational assessment, the role of the school, adult agencies, and the community regarding transition, and developing self-advocacy.
Sponsored by The PDD/Asperger Support Group
Maggie Casciato (203) 374-5111,
mcasciat@optonline.net
www.pddaspergersupportCT.org
May 31— June 1, 2002, Farmington, CT
1st Annual Connecticut Family Support Conference Family Support: What Is It and How Can I Get It?
The CT Family Support Council invites families of children with disabilities, teen self-advocates, providers, and administrators to participate in over 40 free workshops and numerous networking opportunities. The first day of the conference will focus on family support from a national perspective, and the second day will be devoted to issues of family support in Connecticut. Respite, parenting, kids as self advocates (KASA), transition to adulthood, effective advocacy, and available life span support services, including a Commissioner’s Chat with DMR Commissioner Peter O’Meara, are among the various topics. Enjoy a Fajita Bar and Family Night from 5-8 p.m. on Friday May 31 that is also free to families. Pre-registration is required. Early registration is recommended. (Telephone registrations and walk-ins will not be accepted.) Sponsored by University of Connecticut A.J. Pappanikau Center for Developmental Disabilities.
Contact Susan Zimmerman szimmerman@uchc.edu
June 12, 2002, Fairfield, CT
SUPER KIDS
An innovative program started by three experienced child therapists in Ridgefield, CT. Small groups of children and young teens meet weekly for social skills development through a combination of structured activities and free play. Monthly parent support meetings and individual conferences help to solidify each child's goals. Lisa Kuller, LCSW (Licensed Clinical Social Worker), Barbara Cooper, MPS, ATR-BC (Registered Art Therapist), and Nancy Widdows, MS, ATR-BC, LPC (Licensed Professional Counselor) will introduce their program, discuss their philosophy and share strategies that work in the "real" world. Sponsored by The PDD/Asperger Support Group.
Maggie Casciato (203) 374-5111
mcasciat@optonline.net
www.pddaspergersupportCT.org
vAREA FUNDRAISERS
June 2, 2002 National Alliance for Autism Research
"Walk FAR for NAAR" With FAP
Manhattanville College, Purchase, NY
All it takes is a few pledges and a pair of walking shoes to help Friends of Autistic People (FAP) raise money for NAAR. To join or inquire about the FAP Team, please contact Brita.
(203) 661-8510.
bridaranyi@aol.com
June 23, 2002
Ride for Autism
50-mile motorcycle tour around NYC sponsored by the Independent Bikers of Queens to benefit the Bernard Fineson Developmental Center. Raffle drawing for a KAWASAKI VULCAN 1500 DRIFTER donated by King Cycles. www.rideforautism.org
October 27, 2002
CCCD Personal Best Team Cape Cod Marathon
Put your Personal Best to the test for the Connecticut Center for Child Development and autism awareness. Run (walk or cycle) the race that Runner’s World has called "One of the ten most scenic in the United States." CCCD will provide fundraising support, event training, group runs, and two nights’ hotel accommodations on Cape Cod. Or choose an event of your choice as your Personal Best goal. Contact Suzanne Letso for details, at info@cccdinc.org or (203) 882-8810.
vHave You Visited Us Lately?
Recent updates to the CT FEAT Web Site include a reprint of the Tristram Smith, Annette Groen, and Jacqueline Wynn research article, Randomized Trial of Intensive Early Intervention for Children with Pervasive Developmental Disorder. (See ABA.)
Also, view a copy of the CT Department of Education’s February 27, 2002, memo on out-of-state attorneys appearing in due process cases. (See Legal Decisions.)
Updates planned for the near future include listings of local diagnosticians and special education attorneys, and a Spanish translation of a short review of Un Trabajo En Progreso (A Work In Progress, Ron Leaf & John McEachin, 1999)
Also at www.ctfeat.org:
Extended School Year Services
A Clarification Regarding ESY Eligibility
The following letter is excerpted from the State Department of Education's "Update #28,"
dated January 10, 2002
From: George Dowaliby,
Chief, Bureau of Special Education & Pupil Services
To: Directors of Special Education & Pupil Services, Directors of Private Approved Special Education Facilities and Directors of Charter Schools.
A clarification note regarding the provision of extended school year services is necessary at this time. Parents are reporting to the Bureau that some school districts limit analysis of a child's eligibility for extended school year services to a regression/recoupment criterion. This is not a correct application of the June 1, 1996 memo distributed to school districts or of the current case law that addresses this issue. There are both regression and nonregression factors which must be considered in determining whether or not a child may be eligible for extended school year services. They are:
a. The nature or severity of the student's disability
(non regression);
b. The student is likely to lose critical skills or fail to recover these skills within a reasonable time as compared to typical students regression/ recoupment);
c. The student's progress in the areas of learning crucial to attaining self-sufficiency and independence from caretakers (nonregression);
d. The student's stereotypic, ritualistic, aggressive or self-injurious interfering behaviors prevent the student from receiving some educational benefit from the program during the school year (nonregression); or
e. Other special circumstances identified by the IEP team.
The provision of extended school year services is the exception and not the rule for students receiving special education and related services. Extended school year means services provided beyond the length of the regular school year as described in the IEP and is provided at no cost to the parents. Eligibility for ESY must be determined each year.
The determination of whether or not a child will be eligible for an extended school year program and the content and location of the program are generally discussed at the annual review for the child. This should be done early enough to allow sufficient time for any dispute regarding the provision of the services to be resolved before the start of the extended school year program.
All parents should be advised of the availability of extended school year services for eligible children in any parent or student manual, or other description of services provided by the district to parents.
(Editor’s Note: Reprinted with permission from SPEAK OUT, Vol. 19, No. 2., the newsletter of the Connecticut Parent Advocacy Center,
www.cpacinc.org.) v
What's the IDEA? Hearing Officers As
Legislators?(Gary S. Mayerson, Esq.)
Our practice is dedicated to representing children and adolescents with autism spectrum disorders in due process matters across the country. Curiously, we now find ourselves in the uncomfortable, if not untenable, position of suing the Connecticut State Department of Education (DOE), its Commissioner and all of the State’s hearing officers.In September of 2001, Connecticut’s hearing officers collectively decided that, contrary to prior practice and procedure in Connecticut, only attorneys admitted to the Connecticut Bar would hereafter be permitted to assist parents directly in connection with due process proceedings.
This action effectively banned any and all out-of-state attorneys from representing families in Connecticut due process cases brought under the Individuals with Disabilities Education Act (IDEA).
Not only was this action entirely unprecedented, it was contrary to the express language set forth in the federal IDEA statute.
IDEA guarantees that parents of children with disabilities can be assisted by counsel and by other persons with special knowledge and expertise. This action also was contrary to state regulations, which confirm this right of assistance.
The action of the Connecticut hearing officers was a blatant misinterpretation of their authority. Hearing officers in Connecticut do not have any authority to take collective action nor to issue advisory opinions on any issue.
The Connecticut hearing officers’ decision to ban out-of-state attorneys from representing families in Connecticut was inexplicable and justifiably evoked outrage from families and advocates across the state. It effectively allowed families of disabled children fewer options than a criminal defendant would have. That may not have been the intent, but it certainly was the result.
Equally inexplicable and offensive was the State Department of Education’s apparent support of the hearing officers’ abuse of their jurisdiction and power. Without a whisper of challenge, the Department seemingly adopted an "Emperor’s New Clothes" approach, ostensibly so that they would not offend the State’s hearing officers. By circulating the hearing officers’ Connecticut Attorneys Only notice in due process packets, the Department assisted and effectively gave ratification to the insidious effort.
In a recent case brought by local counsel Harris & Harris of Norwalk, a motion was made to the Superior Court to have me admitted pro hac vice.
Pro hac vice motions typically allow an in-state attorney to request that an out-of-state attorney be allowed to join him or her in representing a client when the out-of-state attorney possesses greater expertise in a specific area.
On the day of the hearing, my attorneys were turned away at the courthouse steps and were advised that no pro hac vice mechanism was available at the administrative level for due process proceedings. When we approached the Grievance Committee (which handles ethical matters), my attorneys were advised that the Grievance Committee would not issue an advisory opinion on the matter.
On January 10, 2002, the Connecticut Bar Association convened a meeting of its education law committee and its administrative law committee to consider a Connecticut Attorneys Only proposal. If adopted, the proposal would have resulted in a recommendation to the Connecticut legislature to change the law to conform to the hearing officers’ decision.
After limited discussion among Connecticut attorneys, it was clear that there was no visible support for the ban on out-of-state attorneys.
The Connecticut Bar Association failed to reach any consensus that there should be a recommendation to the legislature regarding this proposal. It did however reach consensus supporting a mechanism to permit out-of-state attorneys to be admitted pro hac vice in due process proceedings, as exists in most states.
On February 6, 2002, our complaint, Gary Mayerson et. al. vs. Theodore S. Sergi and Jane Doe #1-20 and John Doe #1-20, was filed in Bridgeport federal district court. Weeks later, on February 27, the State Department of Education issued a memorandum through its chief of legal affairs, stating the Department’s position: without an appropriate legislative or regulatory change, anyone may properly represent a child with a disability in the context of a due process proceeding.
The surprisingly tardy Department of Education memorandum clearly contemplates a return to the status quo ante: that pro hac vice is not even required and that any attorney can come in without making such a motion. Non-attorney advocates may also represent families.
The question remains as to whether or not the State’s hearing officers will conform to Department’s policy supporting representation by out-of-state attorneys and advocates in due process cases.
It also remains to be seen whether or not the Department will now make diligent efforts to remedy the fact that the hearing officers’ Connecticut Attorneys Only notice has now been disseminated by them for months, communicating a most erroneous and unfortunate message.
In my view, what is needed immediately is a solution that will extend the existing power of Superior Court judges to grant pro hac vice motions in the context of administrative due process proceedings. Connecticut hearing officers, who have already abused their authority, should not be given the power to decide pro hac vice motions.
Additionally, the State Department of Education should secure written confirmation from the State’s hearing officers that they will abide by all applicable statutory and regulatory requirements and the Department's procedural policies. Any impartial hearing officer who is not prepared to adhere to the rule of law should be asked to resign their position.
(Editor’s Note: The law firm of Mayerson & Associates represents children and adolescents with autism spectrum disorders in due process across the nation. For more information you can visit their web site at www.mayerslaw.com
For information on CT FEAT advocacy efforts surrounding this issue, please see United On All Fronts, on pages 2 —3 of this edition of the CT FEAT Newsletter.)
vLegislative Action Update:
Bill 586
(Maggie Casciato)
Many people within the broad autism spectrum do not meet the usual criteria for "mental retardation." But many of these people with "normal" intelligence often find that their autism related deficits prevent them from achieving self-sufficiency and independence.
Ours is one of only six states in the U.S. that provides no services to adults with autism absent a dual diagnosis of autism and mental retardation. Once our children graduate from high school, the support and services that would enable them to become more independent practically vanish. This neglect effectively prevents them from becoming fully included members of the community.
Bill #586 is intended to greatly increase the services and supports available to citizens with developmental disabilities, including those on the autism spectrum. And it’s off to a great start, thanks to the ongoing work of families and other autism advocates around the state.
With continued support, this momentum will lead to very important changes for the autism community of Connecticut.
The Story behind the Bill
Several years ago, Lois Rosenwald and I, both parents of young adults with Asperger Syndrome, gained the support of State Representative Paul Tymniak in working toward reform. In 1999, Paul introduced a bill requiring the Department of Mental Retardation (DMR) to extend its services to all people with autism spectrum disorders.The bill didn’t pass that year, but continued efforts on the part of supporters led to the establishment in 2000 of the Advisory Commission on Services and Supports for Persons with Disabilities. One of the major recommendations of the Commission will be for the State of Connecticut to adopt the federal definition of developmental disability in assessing eligibility for support and service programs.
This definition relies not on IQ or diagnoses, but on the level of ability to function in specified areas of life skills. These include mobility, language skills, cognitive ability, and vocational and independent living skills.
The ripple effect of growing support for such reform influenced the Public Health Committee to introduce Bill #586 this past March. The Bill requires the Commissioners of the DMR and the Department of Social Services (DSS) to design a plan to implement the forthcoming recommendations of the Advisory Commission.
Advocacy Works!
In anticipation of the public hearing on the Bill, the Autism Spectrum Legislative Action Coalition created a network of people who would be willing to go to Hartford on short notice to testify.
When the notice came, parents and advocates from around the state sprang into action. E-mails, phone calls and a bus full of enthusiastic supporters of Bill 586 sent a clear message to our elected officials.
On March 14, about 70 people attended the Public Health Committee’s hearing on Bill #586. We were certainly a conspicuous group, crowding into the hearing room with our bright yellow "BILL 586" buttons.
More than 25 people gave oral testimony, with many others submitting written testimony in person and by fax and e-mail. DMR Commissioner Peter O’Meara congratulated the group on the turnout and commended the Advisory Commission on its efforts. The Committee voted to accept the Bill and, on April 23, Bill 586 was passed unanimously by the State Senate!
Advocates then focused on contacting our State Representatives for support and in early May, just two hours before the before the end of the regular legislative session, the State House of Representatives also voted unanimously to pass Bill 586.
The next step is for Governor Rowland to sign it. When he does, the first phase of this process of reform, for the DMR and DSS to establish a plan to implement our Commission's recommendations, will be realized.
Help Is Needed for Continued Success
Once the Commission’s recommendations are finalized, phase two - to persuade the Legislature and the Governor to approve and then to fund the proposed changes- will require even more phoning, e-mailing, calling, visiting and letter-writing than we have done this year.
For now, a growing wave of awareness of the core issue, the current policy of the State to exclude developmentally disabled people without a dual diagnosis from needed services, has begun thanks entirely to the active support of many people from around the state. Your help can keep the momentum moving toward this much needed reform.
(Editor’s Note: For information on how you can help, or for updates from the Advisory Commission please contact the CT Autism Spectrum Resource Center through Lois Rosenwald at Loro26@cs.com, Stacy Hultgren at BHULT40@aol.com, or Maggie Casciato, at mcasciat@optonline.net.)
vThe CT FEAT Newsletter, which goes out to more than a thousand parents, educators, intervention providers, and clinicians, is made possible through contributions from many caring individuals, organizations, and companies.
Contributions also help to pay for the costs associated with the CT FEAT web site, hotline, parent meetings, presentations, and other activities designed to provide information and support. CT FEAT is a nonprofit organization staffed entirely by unpaid parent volunteers.
You can be sure that your contribution will go directly to provide resources that will enable families and other interested persons to learn about effective autism treatment and to help children with autism achieve their full potential.
An Easy Way to Contact Your State Legislator
You can e-mail your opinions to your
State Legislators with just a few clicks of the mouse.
Go to the General Assembly web site at
www.cga.state.ct.us
Click on "House" or "Senate."
Then click "Find Senator" or "Find Representative."
Please consider sending a check to CT FEAT (address below), or participating in any of the followingprograms that benefit CT FEAT.
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If you are a SNET customer, SNET will pay CT FEAT 5% of every dollar you spend on long distance calling. You can sign up today by calling 800-635-7638. 5
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Donations should be sent to: CT FEAT, P.O. Box 370352, West Hartford, CT, 06137-0352.
v Back to TOPBOOK REVIEW:Teaching Playskills to Children with Autistic Spectrum Disorders
(Continued from page 3)
Because there were few resources available about teaching play skills, Smith began sharing and swapping information on the Me-List, an Internet mail list for parents and professionals interested in ABA. She also gathered information from
developmental experts and attended workshops led by professionals knowledgeable about teaching play skills.
Through this research and her subsequent play experiences with her son, Smith soon realized that she had compiled valuable information that could also benefit others. So, in 1999, she created her popular web site: http://melindasmith.home.mindspring.com.
In 2001, Smith published a 173-page book loaded with helpful ideas and tips: Teaching Playskills to Children with Autistic Spectrum Disorders. The manual is divided into 15 chapters. The first chapter gives an overview of what play is, how play skills develop, and teaching techniques.
Chapters 2 — 11 cover all kinds of play, from imitative play, to toys, pretend play, games, music, sensory play, and arts and crafts.
Chapters 12 — 15 discuss play dates, playgroups, and school-aged children.
The author stresses that language instruction should take priority over play instruction. She recommends that the child should first have at least the ability to communicate desires in some form–using speech, the Picture Exchange Communication System (PECS), or sign language–before beginning to work on play skills. Then, parents and teachers can use Chapter 1 of her book to assess the child’s current level of play and determine where to begin teaching play skills.
The book is geared toward preschool or early school-age children. However, it will also be helpful with older children who are developmentally delayed, especially if they have creative parents and teachers who are able to incorporate more age-appropriate games and activities for them.
Teaching Playskills to Children with Autistic Spectrum Disorders (Melinda J. Smith, DRL Books, 2001) costs approximately $24.95. It is available from Different Roads to Learning: www.difflearn.com or 1-800-853-1057. Other booksellers should be able to locate it by its ISBN number, 0-9665266-3-5.
v 5BOOK REVIEW: Sleep Better!A Guide to Improving Sleep for Children with Special Needs
(Continued from page 4)
Section two offers various ways to identify the specific sleep problem behaviors you need to change.
The use of a sleep diary and other simple data collection tools are addressed and sample forms are included. Collecting and analyzing these types of data will show us what we need to work on. Durand tells us that "most sleep problems can be helped just by having parents change small things about the way they respond to them."
In section three, Durand first focuses our attention on the treatment goal–good sleep habits–and then moves on to explain a variety of strategies to develop effective, problem-specific treatment plans. For example, if the problem is centered on bedtime issues, using graduated extinction of negative behaviors is one option to consider. A technique known as "scheduled awakening" has proven to be effective when the problem falls in the sleeping-through-the-night category. Each strategy is clearly explained and examples are given.
Knowing that Durand speaks from experience with his own son is also reassuring. His encouraging words throughout the book add considerable value to this important treatment manual. This is a book worth devouring if you are a sleep-deprived parent–or if you want to learn how to avoid becoming one!
Sleep Better! A Guide to Improving Sleep for Children with Special Needs (Vincent Mark Durand, 1997) costs approximately $23.95. It is a 288-page paperback, ISBN number 1557663157.
(Editor’s Note: V. Mark. Durand is the Director of the Center for Autism and Related Disabilities and Professor of Psychology at the University of Albany, SUNY. Dr. Durand is a key player in the design and implementation of certification courses in applied behavior analysis through the Autism Distance Education Network of New York. He has authored numerous journal articles on positive behavior intervention for sleep disorders and other challenging behaviors. A list of selected publications and other information about Dr. Durand may be found at http://www.albany.edu/psy/fac_vmd.html, the SUNY faculty web site.) vVIDEO REVIEW: Improving Play Skills
(Continued from page 4)
the previous NYFAC Family Educational Series Video #1, Discrete Trial Teaching. (See the Spring/Summer 2000 edition of the CT FEAT newsletter for a review of this video.) It recaps the basic and advanced prompting techniques, which are so critical when teaching play.
This video provides solid instruction on how to teach basic, intermediate, and advanced play skills
within an ABA framework. A team can easily take this information and add their own creativity and knowledge of their child to develop an individualized play program. Of course, as it states at the beginning of the video, a qualified professional should supervise any program. Once again, NYFAC should be commended for taking on such a worthwhile project that is helpful to so many families.The video runs about 50 minutes and costs $59.95 plus shipping. To order, you can call Different Roads to Learning at (800) 853-1057 or go to www.difflearn.com.
For more information visit NYFAC’s web site at www.nyfac.org.
v