Author: Annette Hines, Founder of Special Needs Companies
When my daughter Elizabeth was young, I used to feel anxious and lose sleep over the transition from summer to the new school year, even as much as she was looking forward to it. Elizabeth was blind and in a wheelchair. She didn’t speak and used a lot of medical equipment to eat, breathe, and well, just live. But for me and so many other parents, the end of summer signaled the time when we hit the reset button on our child’s educational plan. This year, however, is very different.
Under our current situation, your team is somewhat fractured, and more than ever, you are the hub and the gatekeeper of information. As tired as you are, and with all the hats you are wearing, it will be your job to lead this integration back to school successfully. This is the time to pull out your best communication and leadership skills.
As a parent and a professional who advises families every day about these issues, I wanted to give you some tips to help start off the year with your best foot forward.
Here are a few questions you’ll want to ask yourself when creating a back to school checklist for your special needs child:
- Review your child’s Individualized Education Plan (IEP). Has he or she made sufficient progress on their goals? What did you learn while observing him during the distance learning process? Did she do well with one-to-one learning or did she need more? You are in a unique position to report back on your findings. What needs to be changed or updated for the new environment?
- Organize and address any new information you received during the downtime. Was your child ill or has anything changed about their condition? Have there been any changes to your family situation? Did you receive a new diagnosis? If so, do you have new reports or evaluations to share, and did you videotape any of those ZOOM sessions?
- This is a big one! You need to decide if you feel comfortable sending your child back to school at this time. You’re entitled to know and understand what the classroom and school protocols will be to keep him or her safe. You should also think about any healthcare difficulties your child may face. Does your child have an Individualized Healthcare Plan (an IHP) that will need to be updated for the new protocols? If not, should she have an IHP now? An Individualized Healthcare Plan is required by law when a child has a medical condition that impacts his or her ability to access education during the school year/day such as a child who needs to take insulin or other medication while they are at school, a child with life-threatening allergies, or a child with a g-tube and seizures like my daughter, Elizabeth.
- If you decide to send your child back to school, it’s imperative to figure out if their needs can be accommodated. Does your child require one-to-one staffing such as a nurse or an aide? If this is a new request for the IEP then a TEAM meeting will need to be called to discuss the request. The new protocols around social distancing in the schools will impact the timing of your child’s ability to return to school. Even if you’ve always had this one-to-one staffing for your child, new protocols will need to be in place prior to the return to school.
- Another consideration before returning your child to school includes mobility issues. Will the elevators be available now, and are the classrooms spaced well for him or her? Is there medicine or special food that needs to be refrigerated, and will he or she be allowed to use the refrigerator now? What are the new emergency procedures for your child in case of fire or other emergency crisis? These are all questions that need to be answered before sending your child back to a classroom.
- Finally, you should consider calling a team meeting to discuss these issues in a more formal manner. Even though everyone is very busy and inundated – do not be intimidated! Advocate for your child!
The bottom line is this: if you are not comfortable with how things are set up for your child in school, you have options. Your child is entitled to a free and appropriate education under IDEA. That includes homeschooling and distance learning. But it also includes protections and accommodations under the Americans with Disabilities Act and numerous other state laws as well.
Remember to be thoughtful about the long-term value of developing relationships with physicians, providers, schools, caseworkers, and others. Nurture these relationships. Of course, you and your child have legal rights, but remember, these rights are moderated by people. It is always better if plans are a team decision rather than a reluctant response to a demand. Give the team the benefit of the doubt and believe that everyone is working hard and trying their best.
The saying, “you catch more flies with honey than with vinegar” requires patience and thoughtful approach by the person who is in the role of advocate. Some individuals or advocates see this approach as “giving up”, and feel that if they are not “fighting” for the best outcome then they will be defeated. In fact, the advocate who is an active and valuable part of their or their child’s team is the true leader and likely to be more successful in getting the best possible outcomes. Being patient, thoughtful, and encouraging in those relationships with the people and educational providers (who are often the source of frustration and bad news) is a challenge but is so critically important!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.