Part 11 of Our Award-Winning Series “Our Children’s Health”
One of the Long Island Press’ missions, from its start, has been to advocate for special needs kids and work to aid those caught up in the special ed system. In the past three years, the Press has published stories about special needs children in its award-winning ongoing series, “Our Children’s Brains.” The common thread in almost every story we’ve written on the subject is how parents must aggressively advocate for what they believe their child deserves. It is our hope that this installment will serve as a reference guide for parents who find themselves in situations where they are unsure of what to do next, or who to turn to, when trying to do the best they can for their learning-disabled child—or at the very least, chronicle what they might expect when going through the process. And while the Press has heard its share of horror stories when it comes to the special education system, the system can also prove to be a lifeline for the children involved, if a cooperative effort is developed between parents and the school district.
Tom and Linda Burner have been preparing for several months for their first meeting with the special education committee at a Suffolk middle school regarding their son, Robert, 12, who has several developmental, learning and psychological disabilities. In fact, they are so well-prepared—they know their rights; they have spoken to special ed advocates and lawyers, and they are informed on all the ins and outs of this procedure—that they enter the meeting self-assured. They know exactly what they will demand and what they will accept. As they sit at a cluttered conference table in the small office, they look around at the smiling faces. The director of special education enters, and she is no-nonsense. The meeting immediately changes tone, and the moment it begins, it’s a virtual whirlwind. It’s not that it is disorganized. It’s just that it is overwhelming to the Burners. Tom and Linda leave with an Individualized Education Plan (IEP) for their son that includes some things they hoped for—but many things that they were ready to insist on are not included. Tom says it took them a day to shake off the intense pressure of that meeting.
The second time they attend the special ed committee meeting, it is a different story. They already had experience in how easily parents, even well-informed ones, are pressured into agreements. They are now ready to go head-to-head, in order to advocate the best they can for their child.
Tom and Linda take control from the start, by asking one of the committee members—a special ed parent who is mandated to sit on the committee, but one the parents of the child under review can reject from attendance—to leave. They had already sent in notice requesting this, but here she is nevertheless, sitting with a big smile at the table. The Burners feel that she is serving only the interests of the committee and is not necessarily an advocate for their child. She leaves, and the meeting begins. Tom tells the committee what Linda and he want, and every time the control leaves his hands, he lassoes it back in. By the meeting’s end, Tom and Linda receive everything they believe Robert needs.
“It is a very unpleasant situation, no matter how prepared you are,” says Linda, who has now attended three years’ worth of these meetings. “You’re sitting across from all these people who might or might not be well-meaning who are trying to stick to their budgets and who have no idea what your kid is like, and they are making decisions that can literally change your kid’s life.”
Tom agrees. “You have to fight to the death if you’re a parent. You have to do it so your kid gets the services you are paying for, and for the services that they need to become the best they can be. And then you have to be vigilant every minute of the day to make sure they are following the IEP. It’s a full-time job.”
Ask any parent with a special needs child and they will tell you that navigating the special education system can not only be tricky, but downright treacherous at times. Often, parents and guardians are unaware of their rights, the rights of their children, and what services they are guaranteed.
WHERE TO START
If you suspect that your child might be learning disabled, developmentally delayed, or have a psychological problem, there are a number of initial resources. First and foremost, get your child to your pediatrician for a full physical evaluation. Usually the child’s doctor will advise parents where to go from there, to a developmental specialist, geneticist, audiologist, pediatric neurologist or speech pathologist. If you feel that your doctor got it wrong, do not hesitate to get a second, or even third, opinion. Often children with developmental disabilities are misdiagnosed.
Early intervention is the key.
“Undoubtedly, identifying situations is beneficial, particularly with autism and autism-related disorders across the [autism] spectrum, but children with any disability will benefit from early identification and provision services,” says Dr. John Pomeroy, associate professor of pediatrics at the Cody Center for Autism and Developmental Disabilities at Stony Brook University.
Questioning your doctor is OK, and could very well affect the quality of the child’s life. One mother from Nassau learned that the hard way.
June Gordon has two children, Alex and Andrew. Alex, 12, is severely autistic, is non-verbal, and communicates only by grunting at his fingers. When his younger brother, Andrew, 5, was born, he exhibited similar traits. June took her younger son to a doctor, concerned that he, too, was autistic. The doctor told her that the child was simply imitating his older brother and not to worry, it was a learned behavior, and Andrew would stop “acting autistic” when he was exposed to other non-autistic children. For three years June made a point to expose Andrew to other children, but to no avail. When Andrew turned 4, June took him to a different doctor, who diagnosed Andrew as autistic. The child missed out on three years of early intervention that could have shaped his life differently.
If you are not happy with a diagnosis, follow your gut. Look for another doctor. Go to a specialist. Ask around and find people with similar concerns. Check out advocacy groups. There are many places to go to have your child properly assessed.
“As a parent, you have to assess the child’s development. If you’re not satisfied [with a doctor’s diagnosis, one direction to follow is to] get in touch with one of the direction centers,” says Pomeroy, referring to New York State’s Vocational and Educational Services for Individuals with Disabilities’ (VESID) Early Childhood Direction Centers, where parents can call for information and assistance on programs and services for children under age 5 who have special needs. All services are provided free of charge and are administered by the respective counties statewide.
As you enter the world of special needs and special education, you are entering a world of acronyms. We hope that this article will help clarify what they mean.
Once a child under age 3 is determined to have a disability or established developmental delay as defined by New York State in one or more of these areas of development—physical, cognitive, communication, social-emotional, and/or adaptive—the child qualifies for county-level Early Intervention Services (EIS), part of the Early Intervention Program (EIP). This program includes setting developmental goals for the child, and services to be provided, as documented in an Individualized Family Service Plan.
To get the ball rolling to get your child in the special education program in the school system, bring your child’s birth certificate and any documentation of the disability to the school and make a written request (keep a copy) to sign the child up as a “child with a disability needing special education,” as recommended by the New York State Department of Education website. A parent needs to submit a written request for a case study evaluation. If the child received Early Intervention Program services, a letter from EIS from your county is needed to transition into preschool special education.
The Press contacted a variety of Nassau and Suffolk school districts, but none would go on record, citing the fact that their regulations are standard and can be found on the State Education Department website. That said, parents say the process often turns out to be a subjective one on the part of districts.
THE ALL-IMPORTANT 504
Regardless of whether a child with a disability is eligible for special education services, Section 504 of the federal Rehabilitation Act of 1973 provides him or her with protections and provisions to ensure that she or he receives a free, appropriate public education. In other words, if your child does not fit into one of the 13 official disabilities recognized by the federal Individuals with Disabilities Education Act (IDEA) 2004 (check “Resources” sidebar for the full list of officially recognized disabilities), he or she can still get accommodations that will help in school. These modifications are laid out in an IEP and often include small changes such as extra test time, or having a quiet room provided when taking a test, or simply sitting in the front of the classroom in order to better see or hear the teacher. The child might be allowed extra time between classes, or be provided an extra set of books to leave at home. Some children require class notes supplied by the teacher, or by another student. A resource room might be provided, where a child gets extra attention and works on improving study skills. Therapies such as psychological, speech and occupational may also be provided. At their best, these modifications can be adapted to the child’s specific needs, even if they are unique. Other modifications may be more health-related, such as a child with asthma or diabetes who needs to take medication, have his/her blood sugar level tested during school hours, or be provided with special assistive tools. Some children need just a temporary modification, such as having someone carry his or her books if the child has a broken limb. These seemingly little things can make all the difference in the world to a child with disabilities.
Joanne, a mother in the Sachem School District, fought for modifications for her 10-year-old son Alvin, who has a peanut allergy and emphysema and was forced to eat lunch in the nurse’s or principal’s office every day because there were no official accommodations.
“All I was looking for is 504 put in place. He’s on medication, but he doesn’t need to be isolated and have to eat his lunch in the nurse’s office—just a few modifications,” says Joanne. Eventually the school designated a peanut-free table for Alvin to sit at in the lunch room, and he has a fan set behind him to keep bothersome smells away from him.
“It wasn’t difficult, and it made a big difference—now he can concentrate, he can learn. Isn’t that what school is about? Learning?” she says.
THE LONG AND WINDING ROAD
In order to determine what services your child will be allotted, she or he will be referred to the school’s Committee on Special Education (CSE) or Preschool Committee on Special Education (PCSE), and a case study evaluation will be performed. The child’s vision and hearing must be screened within six months, to rule out vision or hearing problems, before any other evaluations can be done. The purpose of the case study evaluation is to establish which, if any, services the child will receive, and what is the best plan of action regarding his or her education.
The initial assessment must include a physical examination report on the child and a review of the medical history; a meeting between the parent or guardian and a special education committee representative; a social development study; and a report on vision and hearing screenings. The evaluation will also include a review of the child’s performance in school (if he or she attends school) and an observation of the child in his or her current educational setting. At the CSE or PCSE meeting, the case study evaluation results, as well as standardized and psychological test results, will be presented and reviewed. In New York State, a psychological evaluation is mandatory for all preschool children entering the special education system.
The child’s ability is measured through achievement tests and through cognitive testing (IQ and memory assessment—which, depending on the child’s disability, may not be accurate). If the child is younger than school age, or is not attending school because of the disability, a home visit will be made by a district-assigned case worker. Other specialized tests can be done, as needed, such as a psychological evaluation, speech/language assessment, learning disability assessment or social work report.
If a child’s primary language is not English, or the child uses a non-speaking mode of communication such as sign language or picture board, he/she has the legal right to be evaluated by a person qualified in her/his primary language or mode of communication.
These are all rights afforded to special education children, but as Tom learned from his experience, parents must be vigilant.
“If your gut reaction is that there is something not right, you need to seek out the help,” says parent/advocate Adrienne Arkontaky, a Manhattan-based attorney. “Many times in the district they are not going to be able to identify the needs of the child.”
THE PAPER TRAIL
Often the process forces parents to assertively advocate for their child and for services. This can be harrowing, especially if the parent is trying to obtain services or modifications and the district does not agree. Some experts, like Arkontaky, feel that the sheer number of special education children in the system doesn’t allow the kids to get what they need, and that is why it is so important for parents to be closely involved.
“The number of students receiving special education services in New York State is around 60,000, and those are only the ones who are receiving. [Parents] have to be their children’s strongest advocate,” says Arkontaky, who knows from experience. She is not only a special education attorney, but also the parent of a severely disabled child.
Having access to your child’s records is invaluable, as well as documenting absolutely every bit of correspondence regarding the child.
Other special education parent advocates remind parents that the district records and documents everything, and parents should do the same.
“Very often, when trying to make a point, documentation will speak for itself,” says Marilee Shannon, a LI paralegal who’s been advocating for parents since 1976.
A child’s parent or guardian and the child’s representative have the right to inspect, review and copy educational records relating to the child that are maintained or used by the school district. The parent or guardian may also consent to the release of the child’s educational records to others, such as a psychologist, for an independent evaluation of the child, or an attorney advocating for the child’s educational rights.
These records include a summary report from previous CSE meetings and any supporting documents such as reports from specialized assessments, most current and previous individual education plans, and the child’s report cards from the past two years. And, as Shannon says, “You are basically entitled to see anything with your child’s name on it.”
Other documents may also be relevant, such as reports of a child’s behavioral problems or incidents at school, or correspondence and written requests from the parent.
“[Documenting everything] can only help the parent and district do what’s best for the child,” says Shannon.
CSE MEETING AND DESIGNATION
If the committee decides that the child is eligible for special education services, the CSE must identify one disability category that most accurately applies to the child and develop and implement an IEP. A meeting will be called to develop and discuss the plan.
VESID reminds parents that they are part of the committee, and are entitled and encouraged to be part of the entire process.
“You should attend this meeting, because you have important information to share about your child,” reads the New York State Education VESID parent guide.
Others attending the meeting include the child’s teacher (if the child attends a school), a school district representative, the director of special education, school representatives and school specialists involved in the testing process (psychologist, speech therapist, guidance counselor, etc.) and outside specialists who provided or are currently providing services to the child (therapist, social worker, medical doctor, etc.).
New York State mandates that a parent representative with a child in special education also be present, unless the parent disagrees. Many parents, such as Tom and Linda, opt not to have that parent representative present.
“A lot of parents and advocates feel that [it] is not in the student’s best interest to have that person there. Sometimes [the parent committee members] are intimidating, or they are uninformed, or beholden to the district,” says Shannon. Another complaint: They have no in-person knowledge of the child.
New York State has amended this mandate, so that parents may waive the right to have the parent at the meeting. That waiver needs to be submitted in writing before the meeting. Something that many parents may not know is that they can add a standing waiver to their child’s records. In other words, Tom and Linda could let it be known that they waive the right to have the special education parent attend any meetings pertaining to Robert for the rest of his time at the school, and this will stand until they revoke that waiver. It must be submitted in writing prior to the meeting.
At the meeting, assessments are provided, test results are presented, the child’s special needs are described and recommendations are made for services. At the meeting’s end an informal report will be provided to the parents, listing the special education services for which the child is eligible, which the parents can agree to sign or not. They can not mull it over at home. If they don’t agree to it, they’ll most likely be told they’ll have to start all over again at a future meeting.
“I was told by the director that I could not leave without signing the IEP,” says Theresa James, a mother of a special needs child from the West Hempstead School District. “I kept refusing and she got mad and yelled. I stood my ground. I was eventually able to put a note where I would normally sign saying, “Reviewing at home with father,” and I was given a copy to take home and a meeting [was set] for [the] next week. I kept thinking to myself, ‘What’s the rush? What exactly am I being pressured into?’
“I was totally shocked. Why would a parent trying to help their child have to deal with this?”
It is recommended that if you don’t agree to the report but don’t want a delay in any other services, you should sign it and handwrite on the consent form: “I am consenting but I don’t agree that this is appropriate.” This way your true wishes are on record, and the district, in the future, can not say that you gave full consent.
If the parent does not agree with the conclusions the CSE has made regarding the child’s needs, he or she may submit a written request to the school district superintendent for an independent educational evaluation. The superintendent has five school days to answer the request. If the district agrees to an independent evaluation, the child will be retested by someone who does not work for the school district, within 30 days, at the school’s expense. If the district denies the request, it must state its reasons. A due process hearing will take place to determine if the district’s CSE is appropriate. If the hearing officer rules in favor of the parent, the district must provide an independent evaluation, and pay for it. If the hearing officer rules in favor of the district, the parent may have the child independently evaluated at their own expense. The parent may obtain an independent evaluation at any time and the district must consider its findings. And sometimes an independent evaluation is better from an outside specialist, such as in the case of students who suffer from auditory processing disorders (APDs).
“We get referrals from the district because the schools are not equipped to do APD testing; an audiologist has to diagnose it,” says Kathleen Page, director of audiology at Hearing Education, Assessment and Related Services (H.E.A.R.S. Audiology, P.C.), in Kings Park.
A parent also has the right to mediation with the district, a voluntary process for the parent and the school district to work out disagreements about the recommendations of the CSE or CPSE.
THE IEP
The IEP is developed based on the student’s special needs. It must be reviewed at least once during the school year. Its purpose is to lay out the goals and objectives for the child, parent and school to work on during the school year, and it should include a statement of the child’s present level of educational performance; annual goals for the school year; short-term objectives for meeting those annual goals; possible materials and methods to be used; and how often said objectives will be worked on. The IEP will also outline the amount of time, if any, that a child will participate in regular educational programming, and any accommodations needed for this to happen. The IEP should be as much a tool for the parent as it is for the district—but it is meant to be flexible.
“The IEP is not set in stone—it needs to be changed based on the needs of the child,” reminds Auburn, N.Y. special education attorney and author of The Special Education Battlefield, Andrew K. Cuddy.
IDEA allows for changes to be made to the IEP with only a parental consent and signature. However, in New York State, an entire new CSE meeting must take place.
“Many parents are intimidated by this process. They show up for meetings where there’s a group of staff they perceive as professional. It’s not uncommon to be intimidated,” says Cuddy, who is diligent in saying that parents should not be afraid to make changes for their child, under any circumstance.
He brings up a method he’s known schools to employ to stultify and confuse parents, as in the Burners’ case.
“Schools use the Delphi technique, intended to stifle and demean the vocal parent by confusing them,” says Cuddy. Again, he reminds parents that the IEP should be a cooperative effort, developed and agreed on by both the school and the parent.
An IEP will also list support services that will or can be provided to the student outside of school—for example, a physical therapist or occupational therapist.
Along with the modifications listed above, other accommodations included in the IEP might include transportation services for children who are, due to their special needs, unable to walk or ride the bus with students without disabilities. Parent counseling and training for parents or guardians of students with disabilities, to teach them how to help their children with schoolwork and learn more about their child’s special needs, are also provided. Modifications to an IEP will also revolve around classes: Bilingual courses and English as a Second Language (ESL) programs may need to be adjusted according to the child’s ability. Also, an adaptive physical education program may be put in place.
Aside from the IEP being reviewed annually, a complete case study reevaluation (CSRE) must be done at least every three years. Notice must be provided and consent obtained in the same manner as the initial IEP. The CSRE will determine the success or failure the child has had with the current plan, whether the child has met its goals and objectives, whether the child still needs special education services placement for the following school year, and plan goals and objectives for the following year.
Parents do not, however, need to wait for the annual review or CSRE. Both the parent and the district have the right to request an IEP meeting at any time, to change the plan or write a new one. If the request is made by the parent, a meeting must be held within 30 calendar days.
PLANNING FOR THE FUTURE
The parent and the district should work together so that the child will get every benefit from the IEP. With that comes future planning, plus transition services and goals for children 14 1/2 and older who need help preparing for life after school. Modifications could include a behavior management plan, vocational education and graduation planning, which would need to begin at least four years before the student is scheduled to graduate.
Even Regents and SATs can be modified.
“Extra test time does carry over,” says Linda Milch, executive director of Long Island Advocacy Center. “Part of the reason for it is to ensure that kids with disabilities have access to high-stakes tests. We want to level the playing field, and if it’s been determined by the CSE that the child needs extra time to demonstrate the learning they’ve acquired, they’ll be allowed that on tests such as Regents exams and SATs,” she says.
Special education children are often eligible to have accommodations move with them on through to their college education. And while students are not guaranteed the same modifications they had during K-12, experts say there is a post-secondary program for everyone.
“Over the years, things have changed and laws have been put in place to allow all students to achieve,” says Christina Cacioppo Bertsch, former director of disability services for Fordham University and independent special educational college consultant.
Besides degrees, there are vocational services, practical application services and certificate programs. Accommodations can include such modifications as extended testing time, receiving copies of class notes, and alternative locations to take tests.
Cacioppo Bertsch stresses the importance of up-to-date documentation. “Colleges want documentation that is no more than three years old,” she says. This is something that should be kept up with at CSE meetings.
In New York State, upon turning 14, a child gets his or her own invitation to attend CSE transitional planning meetings with a parent or guardian. Although it is not required for them to be there, many think that it is very valuable for both the child and the purpose.
“Under transitional planning, they are fabulous advocates for themselves. Who knows better what they can and want to do as an adult than the child themselves?” says Shannon.
PLACEMENT
As part of the IDEA, children with special needs are guaranteed to attend school in the “least restrictive environment” (LRE). This means that children must be in an environment with non-disabled children as much as possible during school for general education purposes (regular classrooms with or without special equipment or aides); non-academic activities such as homeroom, lunch and recess; and extracurricular activities such as school clubs, band, sports, dances and other school events. The environment should meet all the needs and provide all the services as required by the IEP, and adjustments should be made so that the student is isolated as little as possible. That being said, modifications should not be made at the expense of provision of services for non-disabled students.
“You can’t use the term LRE without using the term ‘appropriate’—what is least restrictive for one child is not the same for another,” says Cuddy. “The LRE must balance the child’s management needs versus the child’s social needs.”
By law, the school district must first try to accommodate the child’s needs in his or her local school. Possible options in regular local school settings for children with special needs include, from least to most restrictive, regular class in a regular classroom without an aide, or extra help; regular class in a regular school with extra help, support and related services (inclusion classes); special education class in a regular school for part of the day (resource room), with the child attending regular school the rest of the day with extra help. Another option is to have the child in a special education classroom for the whole day, in a regular school. This is called a self-contained classroom.
It happens sometimes that a school can’t accommodate a child’s needs and the child is what VESID calls “tuitioned out” to a private or public school that is out of the district, or even out of the state. The parent must agree to the student being tuitioned out; the move cannot be done without the parent’s permission. Examples of being tuitioned out may include a special education day school, a private day school or a residential program in a state facility.
As soon as an IEP has been developed and written, the child should start receiving services immediately, absolutely no later than the beginning of the next school semester. If that is not possible, interim services must be provided.
The world of special education has many ins and outs, and it would be impossible to mention every detail or possible scenario here. Each child, district and situation is unique. Often parents of special education children become experts simply because they have to. But even the most adept parents will run into situations where they are unsure of where to go. Know that there are numerous resources, and there is always a place to turn.
“If there is a plus side to all of these kids being diagnosed, now parents have a lot of resources,” says Shannon. “Parents can get involved in organizations and know they are not alone: There’s always someone who’s been there and can help you get through it too.”
Resources
The IDEA 2004 regulations define a child with a disability as one with mental retardation, a hearing impairment, a speech or language impairment, a visual impairment, a serious emotional disturbance, an orthopedic impairment, autism, traumatic brain injury, multiple disabilities, other health impairments, or specific learning disabilities.
For information about the statewide program, contact the New York State Department of Health Bureau of Early Intervention, at 518-473-7016, to get information on free testing as well as early intervention and special education programs.
Christina Cacioppo Bertsch, M.A.
Educational Consultant
Working Towards Success with College-Bound Special Education Students
631-244-5727
Long Island Advocacy Center, Inc. (LIAC)
999 Herricks Rd., New Hyde Park
516-248-2222
H.E.A.R.S. Audiology, P.C.
732 Smithtown Bypass, Suite 301,
Smithtown
631-360-HEAR (4327)
Protection & Advocacy for Individuals with Mental Illness (PAIMI)
Touro College
Jacob Fuchsberg Law Center
225 Eastview Dr., Central Islip
631-761-7080
Protection & Advocacy for Individual Rights (PAIR)
Nassau/Suffolk Law Services Committee, Inc.
1757 Veterans Memorial Hwy., Suite 50, Islandia
631-232-2400
Special Needs Advisory Partners (SNAP)
445 Broad Hollow Rd., Suite 25, Melville
631-881-0862
www.longislandSNAP.com
Integrative Healthcare Solutions
70 Glen St., Suite 300, Glen Cove
516-676-0200
www.integrativehealthcaresolutions.org
Dr. Chris Calapai
C.C. Medical Services
1900 Hempstead Tpke., Suite 503, East Meadow
516-794-0404
Long Island Parent Center
Kellum Street Learning Center
887 Kellum St., Lindenhurst
631-884-1848
The Cody Center for Autism and Developmental Disabilities
5 Medical Dr., Port Jefferson Station
631-632-3070
Fay J. Lidner Center for Autism
4300 Hempstead Tpke., Bethpage
516-802-8600
The Harvey Weisenberg Resource Center
191 Sweet Hollow Rd., Bethpage
631-870-1600
Nicholas Agro, Student Advocate Attorney
Practicing areas: Special Education and School Disciplinary Proceedings
1000 Main St., Port Jefferson
631-642-2478
Lindamood-Bell Learning Process
20 Roosevelt Ave., Roslyn
516-625-5133
www.Lindamoodbell.com
STATEWIDE RESOURCES
Parent to Parent NYS
1-800-305-8817
www.parentoparent.org
The Advocacy Center
1-800-650-4967
www.advocacycenter.com
New York State VESID Early Childhood Direction Centers
www.vesid.nysed.gov/lsn/home.html
New York State Department of Health
www.health.state.ny.us
United States Office of Special Education (OSEP)
www.ed.gov/about/offices/list/osers/osep
Special Education Parent Teacher Association (SEPTA)
Each school district has a SEPTA. Contact your district to get involved.