Living with an intellectual disability or caring for an intellectually disabled person can present immense challenges for families, and the impact on parents' mental health is a growing concern. Research has shown that parents of children with developmental disabilities are at a higher risk of experiencing mental health problems compared to other parents.1 Therefore, it is crucial for families to find the right support systems that cater to their unique requirements.
While navigating the public school system with a disabled child may initially seem overwhelming, it is important for parents to realize that they are not alone. There are numerous resources available to assist them along this journey. By becoming familiar with the existing programs and accommodations, parents can alleviate some of the stressors they may face.
In this article, we will explore the various avenues and resources that can empower parents in effectively navigating the public school system for their children with disabilities, ensuring they receive the education and support they deserve. We asked special education experts to weigh in on some of the most common questions and concerns.
Mona Gomaa is a special education advocate and educational consultant in Maryland with over two decades of experience helping families demystify the intricacies of receiving special services in the public education system.
Emily Archer is a special educator with a Master of Arts in Teaching from Johns Hopkins University and over ten years of experience in teaching children with exceptional needs in Maryland public schools.
Q: What kinds of support services are available for children with special needs in public schools?
MG: Public schools are required [by law2] to provide a free and appropriate public education (referred to as FAPE). Students need to receive the services that they qualify for to receive an appropriate education. The services will depend on the child’s needs. If the public school is unable to meet the child’s needs, then they are obligated to pay tuition to a private school that can provide the needed services.
EA: Public schools can provide supports that range from giving students extra time on assignments, modifying the assignments and curriculum the student is expected to complete, providing specific interventions to help a student that may be behind catch up to their peers, and supporting the child within a small-class environment with a lower student to teacher ratio.
Q: How do you determine which support services are appropriate for a particular child?
MG: Initially, if either staff or the parents are suspecting a disability, the team meets to review all available information and determine if initial special education testing is needed. The team should include at minimum special education staff, general education staff, administrator, and parents. If there are concerns in other areas such as speech for example, then the speech-language pathologist is also invited. Other related service providers are invited if there are concerns in their area.
Students are formally assessed to see if they qualify under a disability. If a student qualifies, then they are eligible for specialized services and support if their disability impacts academics. Students can receive services for the areas that impact academics, speech-language therapy, occupational therapy, physical therapy, adaptive physical education, and other services. Sometimes a student will qualify for a disability but will not need services. An example of this is a student who might have autism but does well in school academically and socially so does not qualify for services.
EA: In determining supports for an IEP (an individual education plan), a mix of formal standardized testing (both academic abilities and cognitive/IQ abilities), review of student work samples, and teacher and parent observations are considered. For a 504 plan, needs are usually determined through a physician's recommendation, a review of a student's grades and performance, and teacher and parent observations.
Q: What is an IEP and what is a 504 plan? What are the differences between the two?
EA: A 504 provides a student accommodation for a specific health issue. These accommodations are changes in the way students can complete work, but they do not change the actual curriculum they engage in. 504s are most used to help students with ADHD or autism spectrum disorder and include accommodations such as additional time to complete assignments, completing tests in a small group, or sitting in a non-distracting area of the classroom. However, 504s are appropriate for any health issue.
An IEP, or individual education plan, is for students with learning disabilities like dyslexia or dyscalculia, students with cognitive impairments or developmental delays, as well as for students with a health impairment that also affects their ability to acquire and retain skills and knowledge at the same rate as their peers. IEPs are more in-depth than 504s and allow a student to access an array of accommodations, services, and class placements. Both 504s and IEPs are governed by federal law.
Q: What steps should parents take to advocate for their child's needs within the school system?
EA: The best thing any parent can do to support their child is to ask for formal testing to determine if they qualify for special education services. Schools sometimes initiate these tests (with parental permission, of course) but in general are slow to do so. Many students are not identified for services until after the 3rd grade - and [by then] that student has already missed critical services during important developmental years. Parents should directly ask for a special education screening through their student's counselor or contact the school's Special Education department chair directly. The earlier a child receives services, if they are needed, the better the long-term educational outcome will be.
You can even seek out services before your child is school-aged through Child Find - a federal system that allows you to ask for the authorized service providers in your area to reach out to you. I did this for my own son when I felt he just wasn't progressing in his speech development. I was able to have him screened and placed in speech therapy before he was 3 years old. These early services allowed him to catch up to his peers and be dismissed from services by the time he was in first grade.
MG: Parents are always part of the team and should participate in all meetings at all times. If they are hard of hearing or English is their second language, the school must provide a translator. Progress reports are sent at the end of each quarter with the report card. I highly recommend that parents start a binder when they start the special education process and keep every paper that is sent including meeting invitations, meeting minutes (called Prior Written Notice (PWN)), assessment reports, IEPs, and progress reports.
They should track their child’s progress reports to make sure that the child is making progress. If they are not, then the school is obligated to hold a meeting each quarter where the child is not making progress. If the school overlooks this for any reason, or if the progress is very minimal, the parent has the right to ask for a meeting to review the IEP and/or ask for additional assessments to see if the child needs additional supports, a change in disability, a change in services which might lead to a change in LRE (least restrictive environment, aka a different school or program).
Q: How can teachers and parents work together to ensure that a child with disabilities is receiving the support they need in the classroom?
EA: The most important thing for everyone to remember - parents, administrators, teachers, students, and related service providers - is that they are all on the same team. IEP meetings are called team meetings for a reason. Many parents and administrators can mistake the process as adversarial and view each other as barriers to their goals and interests. The more cooperative and results-oriented everyone on the team is, the better. The child's input is often left out of this process, but it is crucial to include them in their IEP development and implementation so that they can make the best use of their support and accommodations.
MG: Parent-teacher communication is very important. In the past, we would have agendas or communication books where teachers and parents would communicate in writing. When email came into the picture, it made things easier and there is a paper trail if anyone needs to refer to a previous conversation. (I highly recommend that all communication is in email). Recently, staff have been turning to technology to make things more streamlined. Many create a Google document so that all staff can provide input at one time on a daily/weekly basis. This is especially useful at the middle and high school levels when a student will have more than one teacher.
I encourage parents alongside the parent-teacher communication to always reach out if they have any questions. They have the right to observe their child (giving the school previous notice and coordinating dates/times). They have the right to request an IEP meeting at any time if they feel that services are not being provided and/or if additional services are needed. They have the right to a parent/teacher conference where all (or most) of the teachers are invited to speak with the parents. I highly recommend that parents request a meeting at the beginning of the year with the student’s case manager to discuss the IEP and share any information that might be helpful that might not be included in the IEP document.
Q: How can parents and educators collaborate to ensure that the child's IEP is being implemented effectively?
MG: Data collection is a way to make sure that the staff is implementing the IEP. A good educator will have an efficient data-collecting system that will data on the goals/objectives as well as the accommodations used. Every educator is different. My favorite way was using a Google form as it allowed me to have access to all the students on my caseload even if the goals and/or accommodations were monitored by other staff members. It is also always an easy way to upload work samples by taking a picture immediately and attaching it to the student’s file.
EA: The best way to ensure proper implementation of the IEP is for them to be engaged in the annual IEP review. Student progress in meeting IEP goals is reported quarterly and is supposed to go home along with a report card. This is where a lot of breakdowns in communication and adversarial issues can pop up. In overwhelmed schools that may not have a well-organized special education department, these progress reports can be filled out improperly or not at all. It is vital that parents know they are required to receive these reports, and for parents to read through them thoroughly.
Q: What should parents do if they feel that their child's needs are not being met within the public school system?
EA: If a parent feels a child's needs aren't being met, a parent should act fast and remain collaborative. Don't let your child struggle for months and wait for things to "get better." Bring up your concerns directly with your child's IEP case manager (usually one of their special educators), the school's Special Education Department Chair, your child's counselor, or the grade-level administrator. Don't wait for the annual review meeting or even the quarterly report; even requesting a formal IEP team meeting can take weeks to months to get scheduled. Ask for a meeting with all your students’ teachers or specific service providers. Don't assume that the teachers or school personnel aren't doing their jobs but ask for their input on how your child is functioning in the classroom and ask for specific examples of what they feel is or is not working. Ask for their ideas on what other strategies may help and provide your own as well. Most issues can be worked out at this level - and it is a lot faster than bringing issues up to the district's Special Education Office or school board. If this strategy fails, it is important to find an educational advocate to work with you. There are many nonprofits that provide these services for free. An advocate will help guide you through the channels that may be needed if things cannot be resolved at the school-level.
MG: If the parents do not feel that their child’s needs are being met, they need to request an IEP meeting. They will schedule a meeting with the school and use the data they have (assessments, progress reports, etc.) to show that the school can’t meet the child’s needs and that the child is not showing progress. Sometimes the school will agree with the parents right away; oftentimes the parents need to file for mediation, due process, or send in a complaint. Most families will at this time reach out to a special education advocate or lawyer to help them with which step(s) they decide to take. The following booklet does a good job of explaining the difference between the three: Special Education Mediation | NC DPI
Indeed, parents can pave the way for their children with disabilities to thrive within the public school system by empowering themselves with a deep understanding of the resources available and actively engaging in collaboration with educators and school staff. Building strong partnerships, advocating for their child's needs, and staying informed about their rights and options are essential steps in ensuring success. While the journey may have its challenges, the dedication and determination of parents can truly make a difference in their child's educational experience. Parents, educators, and the public school system can create an inclusive and supportive environment that nurtures the unique abilities and potential of every special need student. Veteran educator Emily Archer adds that parents should keep their children involved in every step of the process, so they feel valued and in control of their educational experience. She added some beneficial final advice to parents:
“It is so important for your child to understand the 504 and IEP process, and to make sure they know they are NOT stupid or inferior to their peers without a 504 or IEP. School was designed to service children that learn ‘typically,’ which in itself is a very vague term. But there are a range of learning styles, abilities, and talents that the public school system simply can't tap into. I always tell my students that there's nothing wrong with them - it's the education system that needs to change and adapt. Your child's confidence is the most important piece of this whole puzzle. Never let them give up on themselves.”
2 Individuals with Disabilities Education Act (IDEA) - The Individuals with Disabilities Education Act is a law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children.
Further Recommended Resources
Understanding the Differences Between an IEP and a 504 Plan | n2y Blog - This article offers a simple explanation of the difference between IEPs and 504 plans.
The Difference Between Services and Supports | Special Education Terms - This article has great examples of some of these services for students with IEPs including specialized instruction. Students with IEPs/504 include accommodations, supplementary aids and services, and related services. Remember, just because a student has a disability, does not mean they automatically qualify for a service.
Muhsen - Muhsen (Muslims Understanding & Helping Special Education Needs) is a nonprofit umbrella organization serving children and adults with any intellectual, mental, or physical disability. They offer a wide variety of services within the Muslim community, including a masjid certification program to encourage accommodations in our local communities.
COPAA - The Council of Parent Attorneys and Advocates, Inc. (COPAA) is an independent, nonprofit organization that works to protect the legal and civil rights of students with disabilities.
Parents' Place of Maryland - The Parents’ Place of Maryland began as a grass-roots effort of families, professionals, and community leaders determined to provide resources, support, and information to parents of children with disabilities and special health care needs.
Protecting Students With Disabilities - This is the U.S. Department of Education’s webpage titled: Frequently Asked Questions About Section 504 and the Education of Children with Disabilities.
Wendy Díaz is a Puerto Rican Muslim writer, award-winning poet, translator, and mother of six (ages ranging from infant to teen). She is the co-founder of Hablamos Islam, a non-profit organization that produces educational resources about Islam in Spanish (hablamosislam.org). She has written, illustrated, and published over a dozen children’s books and currently lives with her family in Maryland. Follow Wendy Díaz on social media @authorwendydiaz and @hablamosislam.