Every fall, families get ready for the rituals of the school year: new backpacks, a fresh pencil case, and a smiling Instagram photo to show the hope and promise that parents expect education to bestow. If you are the parent of a preschooler, you may already be preparing your child (and yourself) for the major milestone that is kindergarten. But as the youngest kids gather in their classrooms, decorated with smiling alphabet characters, many of their parents are becoming acquainted with a new alphabet of their own: the one that defines the special education journey for the 21% of New York State kids who receive such services.
An IEP (individualized education plan) is the pathway to securing supportive services that ensure kids with disabilities have a FAPE (free appropriate public education), which is the bedrock idea behind IDEA (the Individuals with Disabilities Education Act), which was passed in 1975 to ensure kids can learn in the LRE (least restricted environment)—versus being pulled from “mainstream” education—since research shows again and again that kids with learning and other disabilities do better in a classroom of their peers.
But before an IEP is put in place, parents and kids have to navigate a whole lot of alphabet soup: working with the PST (pupil services team) as they apply the MTSS (multi-tiered system of support), a data-based, tiered system of interventions that helps schools define kids’ needs, possibly enact a FBA (functional behavior assessment), working with their school’s SPED (Special Education) advocates to define what supports each child’s needs, ranging from a certain number of hours of additional classroom support by a special educator, to putting the child in an ICT (integrated co-teaching) classroom. The final report is called a SEE (special education evaluation) and leads to a meeting with the CSE (committee of special education), which ultimately makes recommendations about how best to place and teach the child.
And yes, it’s a lot. For everyone involved.
“I always feel like the stupidest person in the room.” This is Denise Banks, a Westchester mom* (names and identifying characteristics have been changed to protect the identity of those interviewed), talking about the experience of being in a CSE meeting for her now second-grade son, who was identified for early intervention services before he even entered school, due to fine- and gross-motor skill delays. An outside observer can quickly assess that she is not the stupidest person in the room: Her fluency with the IEP alphabet left this reporter in the dust as she cited scholarly frameworks for managing dyslexia (Orton-Gillingham, which is a specialized approach to reading) and reeled off terms like “automaticity” with ease.
“I think the biggest learning for my husband and me has really been around the ways that this process pits the parents against the school district,” she says. Banks has company in this point of view: Other parents interviewed for this piece stated a similar sense of the dynamic—although, fortunately, all also believed that, in the end, their children got the support and services they needed.
So, Why Is This So Hard?
Alphabets are orderly and predictable; bureaucracy and thousands of individual children with wildly varying needs are not.
And there are many, many influences at hand that make providing special education services in public schools hard, stretching the administration, SPED providers, and classroom teachers too thin in an attempt to meet the requirements of the law.
And yes, money is at the core: IDEA, which allowed for funding “up to” 40% of states’ special education needs, was never fully funded by Congress, not when it was passed in 1975, and not when it was overhauled in 1997 to clarify and strengthen its commitment to ensuring FAPE (a free and appropriate public education)—and not in 2004, when President George W. Bush reauthorized IDEA with new requirements that teaching methods for children with disabilities be based on peer-reviewed research.
IDEA funding covered only 13-14% of the costs in the 2022-23 school year, creating a gap in the billions for most states, which must cover the shortage. And because of the IDEA appropriation formulas, the gap disproportionately impacts larger states (like NY, TX, CA, and FL) with sizable, impoverished populations. More fully funding IDEA is a bipartisan issue for which Congress has approved additional funding in most recent years—but the money has not yet been appropriated.
So state and local resources have to fill in the sizable gap to fund the broad majority of overall education costs, which puts serious pressure on school budgets. According to Bellwether, a public-policy think tank focused on public education, the average cost of teaching a single special education student nationwide is $13,127—and state and local funds must cover about 80% of that total spending.
A Larger Population of Students Needing Services
New York State is managing more special education students than the average—21% of its enrolled students, versus the national average of 15% of the school population—and the number of students needing services has also been growing year over year nationwide, driven by increased awareness of learning disabilities and also because students and schools are still recovering from the delays and setbacks caused by the pandemic.
“Certainly, there’s been an uptick,” says Dr. Mark Bertin, a developmental behavioral pediatrician based in Pleasantville. “Anyone working in any form of behavioral support, education, or mental health has seen a huge increase in need.” Educators who left the field during COVID-19 also fueled a meaningful gap in sufficiently trained service providers, both working within the school and providing support externally.
Anyone working in any form of behavioral support, education, or mental health has seen a huge increase in need.
A two percent increase may not seem sizable, but the entire support structure for special education is already strained post-COVID. “I am fortunate in our district,” says a special education administrator of a small Westchester school district with a 12 percent high-needs population, “in that we are well-funded—although there are many unfunded mandates,” she is quick to point out. (She is the sole administrator who would consent to an interview, out of seven contacted in the county.) “When you want to provide quality services for students, you need quality service providers, and that’s really challenging right now.” She has a lot of open positions and insufficient quality candidates to hire.
And last, research shows there is also an increased prevalence of learning disabilities and other disabilities that need to be addressed in school. Autism diagnoses are on the rise, which was cited by both Dr. Bertin and the special education administrator, as are ADHD diagnoses (though many ADHD students’ needs can be addressed outside the IEP process, with accommodations like preferential seating, redirect, and additional study tools). Dyslexia diagnoses are more common as well. “You’d think in my district the kids drink the water and get dyslexia here,” says the special ed administrator. “Parents do have more knowledge, but sometimes without full understanding,” she explains, “Just because your child has dyslexia doesn’t mean that they have a disability.”
“The more that we, in a healthy way are accepting and supportive of people with developmental differences, the more people who are willing to get help—that’s a good thing,” says Dr. Bertin.
What Is Challenging About the IEP Process?
The IEP process—every step of which is highly controlled by the IDEA legal framework, with all steps, actions, and decisions defined—is not intended to be complicated, or worse, secretive.
“All the systems are set up to really center on parents, and parents have a lot of rights; the laws are robust,” says Beth Poague, a family and community educator, and a parent advocate for families with children with disabilities. She is based out of the Community Support Network, a NYSED (NewYork Special Education) Office that is co-located in the Westchester Institute for Human Development, which has been a forceful advocate for people living with disabilities since 1950. Early childhood and special education fall under the Family and Community Engagement (FACE) Centers. “I work with families with children with disabilities, to help them navigate the special education process, and work with school districts to improve family engagement,” Poague says.
She also has an 11-year-old son with a disability, a genetic syndrome, whom she has spent years advocating for before stepping into this community support role. “So much of this work is really about having experienced it, knowing what it feels like, and really being able to listen and to support parents in being empowered. And in the end,” she says, “having informed parents really helps the process.”
Poague lists off all the resources available on the Community Support Network/FACE website, including “Special Education 101: Virtual Training of the Parent Member” seminars that are scheduled and run through the year to bring parents up to speed on how to be an informed Parent Member of the CSE committee.
But managing special education services is a little bit like playing Twister and Jenga at the same time: Trying to fit students into appropriate interventions within the schools’ existing student body, and staff count is a complicated puzzle. Schools do all they can to keep children at their home school, but Boards of Cooperative Educational Services (BOCES) has many offerings for students who need higher-grade interventions and is a key part of the process. Add to that complex paperwork and legal requirements and hard-and-fast timelines, and it’s a pretty high-stress process for schools, administrators, teachers, and parents alike.
A common experience for parents, unfortunately, is pursuing a multi-year process of getting answers that explain their child’s disabilities, which is worsened by feeling like their child is “just a number.” This expression was used by several parents in talking about their IEP journey.
Elizabeth White’s daughter’s needs became apparent three years ago in kindergarten, as White received near daily phone calls about her daughter’s poor behavior and inability to follow directions. A 504 (a plan that is developed with the accommodations a student needs to ensure they can access the learning environment within the classroom) was put into place, but the many interventions her family had undertaken for their daughter—medication, a therapist, weekly participation in an after-school social development group—weren’t sufficient. White had a long delay before she could get her daughter in to see the developmental pediatrician, but her daughter was officially diagnosed with autism spectrum disorder (ASD), and twice-exceptional (2e), where the child is both gifted and autistic.
She treated Diana like a case number. We could tell immediately that all she was doing was trying to save the school money.
White felt that the diagnosis helped clarify the kind of support she needed, but when she had her IEP meeting with the CSE at her daughter’s school, she felt completely written off by the highest-level administrator. “She treated Diana like a case number. We could tell immediately that all she was doing was trying to save the school money,” says Elizabeth. “She was pushing for just a couple of special education teachers to come into the school and work with my daughter for a couple of hours a day,” interventions that had not been beneficial and did not align with what the independent evaluation said.
“If it had not been for Diana’s second-grade teacher, the mainstream teacher, and the in-school psychologist—they were the ones who pushed back and said your plan is not what she needs,” says White. “She needs full-time behavioral help.” Their support landed her daughter in the integrated co-teaching (ICT) class, a co-taught general education classroom with full-time support to redirect and assist her daughter.
“She’s been through so much with changing teachers and classrooms,” says White. “But I feel that ever since she started the ICT class, and now that she has a solid IEP and a solid autism diagnosis, we have been getting far fewer phone calls and emails from the school saying, ‘Diana did this,’ ‘Diana did that.’
“It took a long time to get her here, and the support and intervention of many teachers and specialists. But I am of the belief that this is an excellent place for her,” she adds. “I don’t know what the future holds, but we’re in a good place now.”
A Primer on Getting Started
If you are concerned about your child’s needing special education services, here is where to begin
Start with the teacher: During conferences, come to the meeting with a list of questions or observations you have about your child’s struggles so you can compare notes with the teacher and make a plan for how to provide support.
Have a conversation with your pediatrician: Again, bring a list of any behaviors or struggles you’ve identified. If there is sufficient evidence of issues, many pediatricians will refer you to a behavioral pediatrician who is an expert in these areas. Wait times for an appointment can be as long as six months.
You have the right to request an evaluation at any time. You can jump-start the process by sending a letter to the principal or head of special education at your school, containing the following: your child’s age and grade; your child’s struggles or delays with as much detail as you can; and stating that you “provide consent for the school to do the evaluation” so you can skip another round of formal paperwork.
- The school must acknowledge your request in writing within 10 days.
- The school must complete the evaluation within 60 days.
The school can disagree if they don’t believe there is sufficient evidence that your child is struggling or if your child is regularly reaching benchmarks. You can then request either mediation or file for a due process hearing, in which case the school is legally required to formally respond and prove to the hearing office that an evaluation is not warranted.
The evaluation should include:
- a physical (your doctor or the school physician)
- an individual psych evaluation, if deemed necessary
- observation in a learning environment, and other assessments as needed, such as an auditory processing evaluation or a functional behavioral assessment for those children whose behavior is preventing them from learning.
The CSE meeting is the next step after this information is gathered. At the CSE meeting, you review findings to determine eligibility. You have the right to ask for the evaluation to be sent to you in advance of the CSE meeting so you can prepare, usually at least five business days before the meeting. If possible, speak to evaluators before the meeting, so you can actively participate in the discussion.
If it is decided that your child needs an IEP, services must be implemented within 60 days. In a nutshell, the IEP should capture the following:
- Diagnostics
- Goal Setting (what interventions are being recommended)
- Progress Monitoring (how the school will evaluate whether the IEP is serving its goals)
Alphabet Soup
A quick cheat sheet for the most common acronyms you’ll encounter in the IEP process.
CSE (Committee of Special Education): the primary board at your school that oversees your child’s IEP process
CPSE (Committee on Preschool Special Education): the board that oversees IEP plans for preschoolaged children
EI (Early Intervention): federally funded services that provide support for babies and young children aged 0-2 who have developmental delays
IEE (independent educational evaluation): A parent can choose to have their child evaluated by a neuropsych specialist, developmental pediatrician, or other doctor to assess their disabilities and needs to support the decision-making around the school’s IEP process, which can be expensive and time-consuming.
LRE (Least Restricted Environment): the goal established by the IDEA legal framework to keep children in mainstream classrooms and with their peers as much as possible
IEP (Individualized Education Plan): a legally binding document that outlines your child’s needs, the support services the school will provide, and benchmarks to track improvement and goals
MTSS (Multi-Tiered System of Support): a data-based framework that educators use to screen and identify students experiencing academic, behavioral, or social-emotional challenges; typically engaged at the first stages of identifying a child’s struggles, to set benchmarks and track progress feeding into the IEP process if a child does not meet expected goals
504 Plan A 504 plan creates accommodations to help students who do not need specialized instruction but have health impairments or temporary physical disabilities that impact how they participate, i.e. need to leave the classroom for mental health purposes or because they are diabetic and need snacks; also frequently used for students with ADD/ADHD who don’t display comorbid learning disabilities
NYSAA (New York State Alternative Assessment): a test to determine how well students with disabilities learn against the New York State learning standards
SPED Advodate (Special Education Advocate): neutral third party outside of the school to support parents through the IEP process
IDEA (Individuals with Disabilities Education Act): the legal framework that defines the IEP process and guarantees
OT Occupational Therapy
FBA (Functional Behavior Assessment): a tool used to assess and identify a student’s challenging behaviors in school, which leads to the creation of a BIP (Behavior Intervention Plan) if the child is deemed to need support to access education
BIP (Behavior Intervention Plan): see above
ESY (Extended School Year): a plan recommended in the IEP that supports children who will fall behind without continued instruction through the summer
FAPE (Free Appropriate Public Education): the bedrock idea behind IDEA
PSP (Pupil Services Team): the entire body of professionals, counselors, nurses, psychologists, and social workers who collaborate to address non-academic needs of students with disabilities as stated in their IEP
SLP (Speech and Language Pathologist): a school professional who assesses and treats kids with speech and language disorders
SST (Student Services Teacher): a teacher who is actively involved in providing services, supporting meetings, and recommending solutions for a student’s success, along with other staff members like counselors and administrators
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