As students head back to school, education is top of mind for parents of children with intellectual and developmental disabilities. While special education provides opportunities for students to excel, there are often many obstacles that families and students face when working to get the educational support that they are entitled to and eligible for under the law.
The State of Education for Students with Developmental Disabilities
Leslie Lipson, J.D., is an expert in the field of strategic planning for advocacy and education issues impacting people with developmental disabilities. She is an attorney who has dedicated her career to working on behalf of people with disabilities. Founder of Lipson Advocacy, Lipson offers advocacy solutions using general educational and special education law from a values-based foundation and mindset of presuming competency. Lipson Advocacy supports both attorneys and non-attorney advocates to succeed in school-based advocacy and teaches family members, professionals, and allies to stand beside students with disabilities in the advocacy world.
In 2020, the Georgia Council on Developmental Disabilities (GCDD) funded a grant for Lipson Advocacy to convene and lead stakeholders through the Georgia Coalition for Equity in Education (GCEE) who push for practices that ensure education equity in Georgia and work toward inclusive, quality educational opportunities for all students.
Lipson highlighted that many of the issues that lead to discrimination against people with developmental disabilities start in schools. School systems and Individual Education Plans (IEPs) are affected by several factors like ableism, unconscious bias, classism, racism, and etiquette culture. Leslie highlighted issues that are currently affecting the many families and students with developmental disabilities in Georgia with whom she works. Here are some of the most important terms to understand when thinking about discrimination impacting students with developmental disabilities.
Unconscious Bias: negative associations expressed automatically that people unknowingly hold. Studies have shown that unconscious biases affect individuals’ attitudes and actions, creating real-world implications, even though they may not even be aware that those biases exist within themselves. Unconscious biases allow ableism, classism, racism, and etiquette culture to thrive in education. The structure of school systems and education for students with developmental disabilities are difficult to navigate because of the way they operate, and the operation is often created through unconscious biases.
Ableism: prejudiced thoughts and discriminatory actions based on differences in physical, mental and/ or emotional ability that contribute to a system of oppression for people with disabilities. IEPs can be used to segregate students with developmental disabilities from the rest of the school. Segregated classrooms are often in separate wings, trailers, or even basements, and may have different schedules for lunch and recess than the rest of the school. Students in segregated classrooms may not be included in school assemblies or other school- wide activities. This practice instills a feeling of “away and apart” for students in segregated classrooms and their families that can last into adulthood.
Racism: individual, cultural, institutional, and systemic discrimination based on race. Racism is often grounded in a presumed superiority of the white race over minority groups that are historically or currently defined as non-white.
Etiquette culture: unwritten, established rules or customs that a person must follow to navigate a system. Having a culture of etiquette, or “good manners,” can lead to discrimination for those who do not know or who are not able to follow these manners or expectations. If a school or teacher expects parents with children with IEPs to bring homemade brownies to meetings, send handwritten thank you cards, and have multiple caregivers participate at in-person meetings, this is “etiquette culture.” A parent or person who is not able to meet these expectations due to financial or other challenges may face discrimination. It’s important for schools, teachers, and parents to remember that there are laws in place to provide education for students with intellectual and developmental disabilities. “Laws aren’t predicated on niceness. You shouldn’t have to be kind or show up with goodies to get your student what they require to access their education,” said Lipson.
Classism: prejudicial thoughts and discriminatory actions based on difference in socio-economic status and income, usually referred to as class. Paired with racism and etiquette culture, classism plays a large role in who can get the best education where.
Impact over Intent
Good intentions do not always lead to positive impact. While a school may intend to provide superior education for students with intellectual and developmental disabilities, the actions they take to do so may have a negative impact on students and families. Lipson consistently reminds the families with whom she advocates to remind schools to “presume competence.” This means keeping expectations high for students with developmental disabilities and not pre-judging an individual’s abilities. The impact of keeping students in segregated classrooms as opposed to inclusive classrooms with supports is the development of a lasting feeling of being kept “away and apart” for students and families. A separate Special Education Parent Teacher Association (SEPTA) may intend to act as a way to focus on issues pertaining to students with IEPs, but the impact of a separate SEPTA is that the general Parent Teacher Association (PTA) does not take into consideration the unique needs of students with IEPs when making decisions or planning school events. An alternative to divided PTAs is to merge the organizations and include a focus on students with IEPs on every PTA committee so that students with disabilities are always considered.
Challenges and Opportunities from the COVID-19 Pandemic
Lipson explained that the issues of unconscious bias, racism, classism, and ableism have been exacerbated and exposed during the COVID-19 pandemic. While this exposure is found in many institutions, school systems were clearly affected; this exposure provides an opportunity to address these issues. The pandemic’s disruption of education also changed the landscape of parent engagement and understanding of their child’s abilities. When education responsibilities shifted from schools to parents during school closures and virtual education, there was a shift from schools being the primary source of understanding for students’ needs to parents better understanding their children’s needs because of the extended amount of time that they spent engaged in their child’s education. Now parents can better ask for what they know their child needs. Schools received funding support multiple times throughout the pandemic, and many are spending these funds on things they don’t need. Parents: now is the time to ask for investment in education supports for your child.
It is important to understand all the factors that contribute to the current state of education for students with developmental disabilities and the work it takes to make positive changes. While it’s tempting to argue to take apart and rebuild this educational system for the benefit of students throughout the state, parents understand that they must navigate this system, however broken it is.
What is an IEP Meeting?
The Individualized Educational Plan (IEP) is a plan or program developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction, accommodations, and related services.
A 504 plan is a detailed plan for how the school is going to prevent discrimination against your child because of their disabilities. It is a list of accommodations that they will provide to level the playing field between your child and non-disabled students.
The difference between an IEP and a 504 plan is that an IEP provides for specialized instruction for students with specific disabilities described in the Individuals with Disabilities Education Act (IDEA) in grades K-12. A 504 plan provides accommodations to a broader range of disabilities and can serve students at both the K-12 and college levels.
Tips for a Successful IEP Meeting
Lipson’s identified many things you can do as a parent before your child’s IEP meeting. Here are a few ideas to help make the meeting successful.
Prepare by writing a list of goals for your child and plan on taking notes during the meeting to help remember all of the things you discussed. Write down your child’s strengths and weaknesses and be sure the IEP is tailored to your child’s strengths. Consider the past school year’s best approaches and how they can be implemented or evolved to best support your child. Many advocacy professionals recommend using a dedicated IEP binder to keep this content organized.
Advocates encourage students to attend their own IEPs in the interest of self-determination. IDEA requires that a student age 14 or older must be invited to attend their IEP meeting, but attendance is not required. Although each student is different, experts say that younger children (as early as 4th grade) can benefit from and contribute value to their IEP meeting. If your student is joining, prepare them for what they can expect during the meeting. If your student is not old enough to participate in the IEP meeting, you may want to bring along a video or written statement so that their voice and opinions are included in their educational plan.
Be sure to request a copy of evaluation results and new assessments to review and contact the school psychologist with questions prior to the meeting. This allows you time to review and consider information before the meeting, saving time during the meeting. Information from private professionals like tutors or therapist who work with your child can also be beneficial for IEP meetings.
Having more than one adult who is part of your child’s life present in the meeting (this could be another parent, a grandparent, or other advocate) is helpful to provide support and record and take notes.
If you need an interpreter or other accommodation to fully participate in the meeting, request it in writing ahead of the meeting so that the IEP team can provide the appropriate accommodation.
After the IEP Meeting
Congratulations! IEP meetings can be stressful, so take a moment to relax.
You should review your meeting notes and the IEP for any missing information. Follow up in writing with the school to request information that should be included.
During the school year, coordinate with teachers and aides to track progress and proactively troubleshoot any issues. Don’t be afraid to advocate for additional meetings to discuss your student’s progress with their teachers.
Considerations for Parents
As a parent, it can be overwhelming when you know your student needs a support but you don’t know what resources are available to you. If you aren’t sure what resources or options are available to you, there are a few things you can do. If you feel that your student has learning needs that aren’t being met, but you aren’t sure what resources are appropriate or available, you can request an independent evaluation for assistive technology, adaptive technology, or reading instruction.
1) Assistive technology is any item, piece of equipment, software program, or product system that is used to increase, maintain, or improve the functional capabilities of persons with disabilities. You can also request adaptive technology evaluation.
2) Adaptive technology includes any physical items that may be needed to assist your student navigate or exist within the classroom environment. Adaptive technology can be low-tech. Examples can be a special chair, a no- slip seat pad, or other similar items.
3) Reading instruction evaluations are also a good tool to see what needs your student may have. Additionally, plan time to submit questions in writing to your schools, teachers, and/or administrators. Sometimes educators need space and time to get answers and find the resources you need.
Check out trusted resources such as:
Parent to Parent of Georgia:
Center for Parent Information & Resources:
For Information on Student-Led IEPs:
Download PDF: Facilitating Student-Led IEPs
Presented by Lindsey Anderson, OSSE Division of Specialized Education Secondary Transition Webinar Series