The majority of families with disabled youth have interfaced with school employees who just do not “get” disability or disability law. When these shortcomings occur and become chronic abuse, neglect or discrimination, it is usually because employees are ignorant of our nation’s civil rights laws or because they lack sufficient training to be able to incorporate them effectively into buildings or classrooms. Having a child with medical issues is enough of a hurdle within families without parents or caregivers having to fight education rights battles as well. So the question then becomes, when is enough abuse enough? The sharp, pointy answer is: when you are done allowing them to get away with harming your child.
Many misunderstandings occur about ADA, IDEA, the Rehabilitation Act, IEPs and 504s, and HIPAA within publicly funded schools. Yet all citizens, adult or not, disabled or not, student or not, are entitled to equitable access and opportunity. In public schools that receive federal funding, these federal laws must be strictly adhered to in order to continue to receive federal funding. But how the application of these civil rights laws play out in the trenches of the schools themselves can be much different than intended. It is common for parents, direct caregivers, and especially students to feel misunderstood and disempowered when discrimination occurs.
Employees discourage students from participating in certain classes, activities and programs because of their disabilities daily in the U.S. Parents hear “your child is not excluded, he/she just doesn’t qualify” by well-intentioned but ignorant administrators and educators. We all probably know a disabled student who has switched from a class or school because the school wouldn’t actually deal with discriminatory policies or staff behaviors. Problems such as these will almost certainly continue until a parent, caregiver or student causes the school district to end them for good. As a retired public school teacher and parent of two disabled students, please keep these things in mind when invoking needed change:
1. Rights are rights and citizens aren’t supposed to have to beg for them. It is not our job as a parent, caregiver or student to have to educate the school system and ask employees to stop either directly or passively discriminating against the disabled. It is never acceptable for a member of the public to have to do this, let alone feel compelled to repeatedly. Federal law isn’t negotiable in the U.S. Even microaggressions like snarky causal comments aimed at marginalized students are fair game for being directly addressed.
2. Parents and their disabled students are the leaders of the IEP and 504 meetings, not the staff. Items cannot be removed from these plans without your permission, and you can add things to them whether or not the staff is happy about them. IEP and 504 are “access” laws, which means that it is intended that you/your child have the same access as other students. The school can be required to modify the curriculum (change what is taught and/or the level at which content is taught) for an IEP student, and can be required to make educational accommodations (change how non-modified content is taught) for a 504 student. Once the educational plan is in place, it is not a parent or student’s responsibility to remind staff to adhere to it 100 percent.
3. Whether the school has money on hand to afford accommodation tools, ambulatory supports, or the staffing to provide OT is not your problem. Whether you/your child causes the staff extra thought or effort is not your problem either, as it is literally part of their job description. It is frustrating when staff and administrators aren’t trained and knowledgeable, but it’s not your job or your place to attempt to train or educate them. It is easy to want to step in to rescue the disabled student when the school demonstrates its shortcomings. Be mindful that this often only causes temporary and incomplete change. Be prepared to do more, and know that if staff hazes you for your advocacy in any way, that too is discrimination.
4. Document everything — your challenges, your child’s experience, meetings, dates, names and titles of staff members involved, letters from your medical care team — everything. Insist on emails when interfacing with school employees so you have responses in writing. When you have phone conversations, take notes and after the end of the call, send an email to the school employee to outline what was discussed just to get it documented. Copy the correspondence to a secondary email account or download it into a saved document. It is important that you keep an accurate accounting. The paper trail is holy.
5. Your school’s IEP or 504 coordinator should be your child’s most valiant champion. Yet sometimes they aren’t. The same goes for building administrators and district-level directors. Ableism is rampant. When (not if) abuse occurs, use your due process by communicating your expectations openly with the person who needs the extra training as well as their supervisors. Head to the top of the chain of command if need be. If that stalls out, or you observe that the staff isn’t cooperating in a spirit of goodwill and honoring your child’s rights, move onto the next step quickly.
6. Contact your state’s disability law center. You can find yours for your state/territory by accessing the National Disability Rights Network. These are the people who will help you and honor your child’s experience without making you defend, justify, argue and validate. They can educate you on you/your student’s rights, as well as send a letter to the school to offer the school some education suggestions and classroom or policy tips, for example. Your interface with them will be documented, and that means the school’s misrule is documented as well. Sometimes lazy school staff pushes boundaries and the sooner they learn your hard limits, the better.
7. Contact the Office of Civil Rights. Further, the U.S. Department of Education has a branch of OCR enforcement of its own, and this is where one can lodge an official complaint regarding discrimination in public education. You will need to use all of your documentation, there will be a federal investigation, and if found guilty the school district will be charged with breaking federal laws and required to make amends. If you travel this route, ask that OCR require in remediation that the district appropriately train their employees on civil rights so your child and others like them will not have to suffer further harm and neglect. As mentioned prior, should the school district fail to make necessary changes as lined out by OCR enforcement, the district risks directly losing its federal funding. This is a significant motivator.
8. Whether or not you file a federal complaint, you do have the right to enforce IDEA/IEP/504 laws, as well as civil rights and discrimination laws, through a private lawsuit. You don’t need a “right to sue” letter to be able to take a school district to court. Your case will be substantially strengthened if prior OCR findings indicate that federal laws were broken and your child was harmed as a result. Private litigation is the last step a parent, caregiver or student should have to take, but take it if you need to. If you choose this option, use the skill of a competent civil rights/ADA trained attorney.
Discrimination in the educational setting within the U.S. is on the rise. This is due to a combination of factors which include an increase in social acceptance of discriminating behaviors and attitudes, continued federal cuts in education funding, cuts in public school district and building level funding for training seminars and workshops as related to disability law, and increased personal out-of-pocket cost of college-level continuing education classes to educators themselves. Disabled students often experience the brunt of these types of changes. Therefore, the parent or caregiver must not only provide for the general welfare of their disabled children, but also protect them from educational institutions, policies and employees who are failing in their duties.