October Meeting Report: Turning 5

B&N at Union Square turned out to be a pretty good place to meet -- accessible to many even on this lousy wet day. The cafe did not get busy until about 11:30. So it looks like we'll be there in December and for a while to come.

Our schools conversation focused on managing the "Turning 5" process, where one leaves the Committee on Preschool Special Education system and graduates to the plain 'ol Committee on Special Education.

The Context of this Transition
The majority of school-aged special education program seats are operated by the NYC Department of Education, while most preschool seats are operated by not-for-profit organizations under contract to the NYC Department of Education. This is in some ways a subtle difference, but the switch from the DoE being only the payor, to the payor and the provider, makes a world of difference in their approach to your child as a client of the system.

For a autism spectrum child, this transition, like all transitions, will be frustrating because it means change -- except in rare instances, you will probably be saying goodbye to teachers, therapists, and other trusted professionals for reasons that are not rooted in your child's development and needs. Occasionally, you will have therapists who can and do accept reimbursement with both the CPSE and CSE. Ask your current providers if they will be able to continue with you in the school age system -- not all can but those who can are often worth trying to keep to maintain continuity for your child.

Public or Private?
This advice assumes that you plan to seek a non-public school placement for your child who is approaching school age. Some members of our group have been happy with placements in city operated programs for children on the spectrum. For kids who are lower functioning, these placements are typically District 75 segregated special education programs, usually 6:1:1 classes with children classified autistic. Higher functioning kids who have good receptive language and at least some expressive language can consider Collaborative Team Teaching (CTT) classes that have up to 10 kids with an IEP and up to 15 general eduction kids in your neighborhood school or nearby Community School District operated school. You should try to visit at least one of these programs so that you will have a point of comparison for your preferred placement. These two are not the only options within the Dept. of Education, but they are the most common I've seen.

Through this year, you will be doing one dance with the school or schools you want your child to attend, and another parallel dance with the Department of Education. In simplest terms, you want to pursuade a program that it wants to serve your child, and pursuade the DoE that it cannot properly serve your child in programs that it operates.

An alternative to this second dance, which is relevant to only some schools, is to simply place your child in the school and basically sue the school district to fund it after the fact. This is called a "Carter proceeding". This route really requires that you retain an education attorney, and your settlement with the DoE, if you prevail, is a percentage of the actual tuition, paid as much as a year after the fact. Your proceeding will be heard by a hearing officer who is like an administrative law judge, and should you pursue this you will want to build a record of your child's needs and settings or practices that have been unsuitable, ineffective, or incompetently administered. This is a stressful and contentious route, and it is more difficult to do out of the gate than after your child has been in a placement that has been a failure.

And finally, for a few schools, you can place your child in the program, pay the tuition, and forget about the school district dance. Each family that does this is a little defeat for the principle of a "free and appropriate public education" for children with disabilities, but your child is not a principle and needn't be sacrificed to one if you can afford the truly staggering retail price of a specialty private school -- because of the lower staffing ratios, think Dalton tuition + $10,000 at a minimum. Schools in these categories do not generally have scholarships. Most families who go this way eventually seek a settlement with the school district, and it is worthwhile take the time to build the record over which this negotiation will take place.

Evaluations
In early fall of your child's last preschool year, begin to schedule visits with candidate schools, and schedule a private psych evaluation with a developmental pediatrician. Your evaluation cannot be more than a year old at the time of your IEP meeting, but you want it in time to provide to schools so they can judge whether they match your child. December/January is about ideal for this.

Select Private and Non-Public Schools
Schools for kids on the spectrum can be usefully thought of in several categories:

• Behavior analytic/discrete trials methods (ABA): NYCA Charter School, NYCLI, Eden II, Hawthorne Country Day School Manhattan Annex, AMAC, QSAC, The McCarton School

• Developmental or Social Cognition Curriculum: Learning Spring, Aaron School, Rebecca School, PS 32 Model School, The Child School

• Learning Disabilities schools that often say they don't serve spectrum kids, but certainly have some in the school population: Parkside, Gillen Brewer, Gateway, Churchill

• Inclusion placement with supports: This can be the CTT model described above, or general education placement with related services. This can even be regular private school, with publicly funded related services or counseling.

School Visits and Interviews
Visit several schools in the category you think your child is in, plus one in the next less restrictive category for comparison. Generally, behavioral is most restrictive, developmental next, LD, then inclusion. Each school will have slight variations in their intake/application process. Fill out their forms, get them prior evaluations and progress reports from your current program, etc. If your child's reports pursuade the school that he or she may be appropriate, they will often schedule an observation or visit, and they will generally tell you that your child is "appropriate" for their program or not. This is not an acceptance, as they may have dozens of kids who are "appropriate" and it is in their interest to do so. If they have just a few spots, they are likely to take the first kids who were appropriate whose school districts call them asking for a Pupil Acceptance Letter (PAL).

Labels to know for the IEP and Placement
In addition, find out what disability classifications each school can or does serve. In preschool, your child was "a preschooler with a disability", at school age you have to pick a label, and that label does not really matter other than it has to align with the child's placement. There are thirteen of these categories under the Individuals with Disabilities Act, including: Autism, Deaf/Blind, Deafness, Emotional Disturbance, Hearing Impairment, Mental Retardation, Multiple Disabilities, Orthopedic Impairment, Other Health Impairment, Specific Learning Disability, Speech and Language Impairment, Traumatic Brain Injury & Visual Impairment.

Several of these are obviously not appropriate for autism spectrum kids, but a surprising number of them actually get used. In general, an autism classification is needed for the lowest staff ratio placements, but OHI, SLD, Speech/Language, and even ED can be used. Once you know what classifications are accepted by the programs you think are appropriate, you can steer your evaluations appropriately. At the same time, share your perceptions about programs with your evaluator to see if they share your judgments.

Footnote: A caution on the ED classification -- in New York City and perhaps elsewhere, the ED classification is often given to kids who have mental health rather than developmental issues, or who exhibit aggression that they may have learned at home or in the community. Unless an ED program is exceptionally good, it will be a ideal place for an autistic child to be victimized.

Dept. of Education's Turning 5 Process
In late fall, the Department of Education will schedule "turning 5" open houses in each borough explaining their procedures and timeline. Attend one of these meetings or get a report about what was said. You may find out who the "turning 5" coordinator in your DoE region is, and this will be an important contact.

Generally, the turning 5 specialist from the region will contact you or your child's school to start the transition, usually starting with a general survey, and perhaps scheduling a visit by an education evaluator to your child's program. Respond to them promptly and completely.

You may be invited to bring your child to the Regional office for an appointment with the school psychologist or psychiatrist. This is often a frustrating waste of time, but it must be done. It is rare that this person and setting elicit a good performance from your child, since there will likely be no attractive materials or activities, and the professional will talk from behind their desk. In some sense, the worse your child performs on this occasion, the better for your non-public school argument. At about the same time, your child's related service providers will be asked to prepare progress reports or evaluations for the IEP meeting, or rarely, you may be asked to bring your child to evaluators for each type of related service (PT, OT, Speech).

Transition and Related Services
Related services such as speech, occupational, and physical therapy are now provided in 30 minute increments rather than 60. Often, this means the same number of units of a therapy are approved, which is now half as much. If a particular type of therapy is essential for your child, make sure your evaluations capture this. Obviously, a trip across town for a 30 minute session with a therapist is less attractive to you and the therapist, and your child will not suddenly get twice as much benefit from a session. In the school age system, the assumption is no travel time because most related services will be delivered in school. At this stage, you will only be discussing the number of units of each type of service. Once you have a settled placement, you can begin worrying about the actual provision of the services, which vary greatly among schools.

Waiting, Waiting, & Wondering
In February and March, your parent peers who are applying to private schools will be hearing about acceptances and rejections. Your child's IEP meeting will likely not take place until April at the earliest, and perhaps as late as mid June. In April, your neighborhood school will probably announce Kindergarten signup day. If your child may be appropriate for CTT Kindergarten, go to this sign up. If not, avoid this neighborhood ritual if at all possible, as it is likely to make you unaccountably sad or angry.

Spring of this year will therefore be an incredibly tense time for you -- find a designated person to gripe to, step up your anxiety medication, or whatever else is necessary. Try hard to not take this out on the school or school district staff you must deal with, as you do need these people to deal fairly with your child.

The IEP Meeting
Because there is a shortfall of seats compared to the number of kids seeking them in all the categories discussed above, you want your IEP meeting earlier rather than later. Complete all requested paperwork and cultivate the personnel so that you can ask for an earlier date.

Unlike the preschool system, where your meetings with a CPSE administrator were attended by you, a school or program representative, and perhaps a "parent member", school age IEP meetings have a committee that must include a social worker, general education teacher, education evaluator, school psychologist, & parent member. You may be literally outnumbered, and It is easy to feel outgunned in this context, so you will want to bring your own team. It's obviously good for both parents to come, along with staff from your child's preschool program and whatever kind of parent advocate you might be using.

Your objective in the IEP meeting is to get the committee's approval of "non-public school" placement for your child. In DoE language, you want a P-1 letter. If you have already visited a D75 or CTT class, you can more easily argue against these placements in this meeting. Committees will usually say that they can't talk about placement, just program type or characteristics such as ratio or curriculum, so position your arguments accordingly on class size and program features. Your second goal is get the disability classification that aligns with the program you want. Bring your evaluations, which members of the committee may or may not have read or even received. Bring a large photo of your child, as the educational evaluator who probably did an observation, and the school psychologist are likely the only ones who have even a face to put with your child's name.

IEP Committees have been known to issue "NPS" recommendations (P-1 letters), and if they do you want to be on the phone with your desired program right away to get their Pupil Acceptance Letter. Let their program administrator know the date and time of your IEP meeting so they can be available if you get this outcome.

If Your Request is Not Approved
Often, the committee will not agree or will say they are not authorized to offer a P-1 letter, and will refer you for placement in a DoE program. Now you need to do two things: request an impartial hearing, and visit the recommended program. Find out who the Placement Officer is for your region, and follow up to see when a placement recommendation will be issued. When it is, visit the school and record the ways the program will not meet your child's needs. Take care not to antagonize the recommended program's staff, as you may end up there for a time.

If you are going to request an impartial hearing, sign only the attendance sheet for the IEP meeting and follow up with a letter requesting an impartial hearing addressed to the CSE Chair for your region. What to do from here is really the subject of another posting, and as I've never traveled that territory I'll leave it to another source.

Representation and Resources
If you are in the impartial hearing trajectory, you will want to retain an education advocate or attorney. The most well known of these attorneys in the NY area is Gary Mayerson, whose book How to Compromise with Your School District without Compromising Your Child contains excellent strategic advice and will probably save valuable time no matter what advocate you select. The following are the most well known education attorneys in NYC, with contact info found on superpages.com

Gary Mayerson & Associates
330 West 38th Street #600
New York, New York 10018
(212)265-7200

Regina Skyer
Skyer & Most Attorneys
276 5th Avenue Rm 306
New York, NY 10001
(212) 532-9736

Neal Rosenberg
Rosenberg Neal Attorney
9 Murray Street, Front
New York, NY 10007
(212) 732-9450

Michele Kule-Korgood
Kule-Korgood Michele Law Offices Of
9820 Metropolitan Avenue # 2
Forest Hills, NY 11375
(718) 261-0181

If you are unable to retain private counsel, you can get some assistance and referral to not-for-profit advocates from Advocates for Children of New York at www.advocatesforchildren.org

An excellent general & nationwide site on special education law issues is www.wrightslaw.com

Grace Foundation 3rd Annual Conference

THE GRACE FOUNDATION
THIRD ANNUAL CONFERENCE
NOVEMBER 18th and 19th
Hilton Garden Inn, Staten Island

www.graceofny.org for printable registration form

We are pleased to announce that the GRACE Foundation's Third Annual Conference "Living, Understanding and Learning about Autism" has secured our guest speakers, Jerry Newport (an Advocate with Asperger's Sydrome) and also the Author of "Your Life is Not a Label"; and Eustacia Cutler (mother of Temple Grandin,PhD) author of "A Thorn in My Pocket".

Other speakers include Barbara Bloomfield, M.A.,CCC-SLP, presenting on Visual Supports and Structured Teaching Strategies to Assist with Core Challenges of Autism Spectrum Disorders.
Additional topics to be discussed include: Relationship Development Intervention (RDI); Sleeping Issues; Assessments; Language: Siblings: Motivational Methods; Sensory Integration; and Behaviors.
The combination of excellent speakers and interesting topics will demonstrate this Conference to be very interesting. SAVE the Dates November 18th and 19th.
For further information, call the GRACE office (718) 605-7500.