It's early in the morning, still dark outside, but I can't sleep.
What's happening in our country is too big, too ugly, too scary, to allow me peaceful dreams.
Right now, those in power are trying to dismantle the Department of Education. Those with the power to make these decisions have no credentials or qualifications for the jobs that they are performing. I'm all for different perspectives, a fresh point of view, but you need to have a basic understanding of the systems before you can make INFORMED, RESPONSIBLE decisions. When the head of the Department of Education doesn't even know what IDEA stands for, I'm terrified for my students, their families, and more personally, my son. So I'm going to try to help you understand what IDEA stands for.
IDEA is the Individuals with Disabilities Education Act. It is a federal law ensuring free, appropriate public education for eligible children with disabilities.
But it's so much more than that.
When our son was nine months-old, he couldn't sit up by himself, crawl, or perform other important gross motor (large body movement) skills independently. He wasn't babbling, cooing, or producing many sounds. Our primary doctor was concerned because our big, beautiful baby wasn't making the appropriate developmental gains that he should have, so he referred us for early intervention.
After going through the evaluation process, it was determined that our son needed weekly physical therapy (PT), occupational therapy (OT), and speech. That meant that every week, three specialists came to our home for 30 - 60 minutes a session to work with our son, to try to help him strengthen his deficit skills. My husband and I both work, so this required a lot of schedule juggling and flexibility from our employers. Because we both work, we had decent medical insurance. (Twenty years ago, that was much more common in our country.) Shockingly, even though we had good medical insurance, our plan only covered 15 therapy sessions per calendar year. If you do the math, 15 divided by 3 therapy sessions per week equals 5 weeks of therapy. That's it. Our baby couldn't sit up or crawl or attempt to speak to us, but our insurance company would only give him 5 weeks of services.
Devastating. Overwhelming. Infuriating.
I was an early childhood, elementary certified teacher who specialized in exceptionalities but my skills were not enough to help my own son. He needed greater supports than what I could provide. We were doing all the right things, but the systems were keeping us from supporting our son in the ways that he needed to grow and develop successfully.
One of the case workers involved with early intervention told us that we should apply for Medical Assistance (MA). I told her that we wouldn't qualify for MA. We both worked and wouldn't qualify financially. That's when she explained that MA has a medical loophole that allows children with disabilities to receive additional medical assistance to help meet their medical and developmental needs. I was really resistant to the idea. I was raised in a "pull yourself up by your bootstraps" kind of family. We were hard working, working class people. You don't take assistance from the government. I was embarrassed. I had no idea how to even start the process.
But when you love someone more than you need air to breathe, you swallow your pride and do the uncomfortable things. So I applied for MA for our son. He definitely qualified and we soon received his new insurance card. Can I share with you that it took almost a decade for me to stop being embarrassed when I had to show that insurance card to the people at the doctor's office? The insurance provided through our employer was charged first. Services (like our son's therapy) that weren't covered by our primary insurance were then picked up by this secondary insurance. It was embarrassing. I didn't want people to judge me. But, you'd be surprised what you can do if it's for your child. You swallow the embarrassment down and move forward, because you can see his progress. You can see him getting stronger and starting to use sign language and early speech.
Medical assistance provided medications that kept our son alive. He had severe asthma and respiratory issues (because of his low muscle tone) that required specialized medicines and treatments. One of his many medicines had to be renewed every two weeks. That medicine, without MA, cost $420 for a 14 day supply. If you do the math, that's almost $11,000 a year. That was my salary my first year as a preschool teacher. Without that medicine, our son couldn't breathe. He became very ill. He would stop eating. That medicine kept our son alive, but it cost the equivalent of what I earned in one year. Medical assistance gave our son life.
The services that our son has received under the protections of the Individuals with Disabilities Education Act have allowed him to grow, develop, and thrive. He graduated high school and earned his diploma. Because of his hard work and the effort that he put into his education, he earned multiple scholarships. Today, he is attending a special education technical college for culinary arts. This technical college specializes in training people with disabilities in the trades. It prepares them to enter the workforce and become productive citizens. They aren't going to be a drain on the system. They will graduate and help support the system. The investment of funds when they are young will create individuals that support the system, rather than take away from the system. Without the supports he received as a baby, as a toddler, as a young school age child, and now as a college student, we wouldn't be where we are today. He is successful and will continue to be successful because of the protections provided under the Individuals with Disabilities Education Act.
It took thirteen years to identify our son's condition. It is a de novo genetic condition. That means that while he was forming, a random mutation, or rewriting, OF ONE GENE in his entire genome, caused a multitude of developmental delays and conditions. It wasn't anything that I did, or my husband did. It was a randomness of life. But I can't say that it was a bad thing. Not at all. Our son brings joy and love to everything that he does and everyone that he meets. The world is a better place because he is in it. Our son matters!
I'm grateful that there are people out there who have never had to navigate these systems. People who have had the privilege of having typically developing children. Who never had to watch their child struggle to do EVERYTHING, including breathe. I hope that they recognize that it is a privilege. They are lucky. I'm grateful that they never needed the protections granted by the Individuals with Disabilities Education Act or the services provided by the Department of Education. I pray that no child would ever need those services and protections. But they do. They absolutely do. So the people that head up those departments and services, should at least have the decency to know what they are, what they stand for, what they do, and who they stand for. And if you've never lived this experience; never had to beg for a doctor to PLEASE help you figure out what is wrong with your child; looked a teacher in the eye and asked them to see your child the way that you do and love and respect them the way that you do; if you've never had to live that life, maybe judge less, love more, and ask important questions in a kind and respectful manner. Kindness goes a long way. Ask my son. He could give a masters class on kindness.
Systems need evaluated and updated. But RESPONSIBLY. With an educated, informed, decision making process. That is not what is currently happening. And I'm scared to death.