Daisy Has Autism by Aaron J. Wright should be mandatory reading for every school board member, school administrator, and teacher. It’s a book that will help parents of children with disabilities know they’re not alone. It’s an interesting story for anyone.
The book details the struggles of Arthur and Annie Russell, whose daughter has autism. The challenges they face getting her services in their local public school are overwhelming.
As I read this book, I repeatedly asked why? How could this happen? Our public schools are supposed to serve all children.
In 1975, P.L. 94-142 guaranteed a free appropriate public education to each child with a disability. This law had a dramatic, positive impact on millions of children with disabilities in every state and each local community across the country.
So, what happened?
The Individuals With Disabilities Education Act (IDEA), which Aaron has guest blogged about, is the reauthorized P.L. 94-142. The federal mandate was changed, but it is still meant to be for children to receive educational services. But as Aaron previously indicated, students are being denied the services they need.
In Daisy, Arthur and Annie Russell face a maze of road blocks trying to get their child a legally mandated (IDEA) free appropriate public education. Their nightmare includes repetitive, unnecessary paperwork, dismal meetings in depressing rooms, and a continuing denial of services by individuals who treat them like an enemy.
There’s nothing more worrisome and life stealing than wondering what will become of your child with special needs, especially when you cannot find the support services they need.
It’s important to recognize that this doesn’t only happen to the Russell family, but to parents and children across the country. Parents with children who need services will tell you, they have no time for analyzing why their children are denied help. The future for them has already become the past. They want and deserve services for their children today!
In Daisy, it becomes obvious that there are those who masquerade as caring for children when they don’t care at all.
The reader walks with Arthur and Annie as they strive to keep their home life together caring for both their son and daughter. They take each step in their school district to laboriously follow school rules…rules that turn out to deny their daughter services!
Why do public schools do this? Parents and educators have their ideas. Expense is one reason. The push to privatize public schools is another.
A recent NEPC report, “Funding Special Education: Charting a Path that Confronts Complexity and Crafts Coherence” by Tammy Kolbe indicates that the federal government only covers about 15% of special education costs. This creates a burden for local school districts. Her report helps us better understand the problem of funding special education in public schools.
Today’s challenges for special education funding are rooted in a complex regulatory and policy environment that reflects little forethought about who can and will pay special education costs. Despite the fact that states and school districts are legally required to ensure a free and appropriate public education to students with disabilities, the federal government does little to fund the special education that students with disabilities receive, which places the overwhelming burden on states to implement and pay for programs.
The National Center for Learning Disabilities states:
When Congress passed IDEA, they promised to cover 40% of the extra cost of special education. In other words, they would pay for nearly half of the additional cost required to educate students with disabilities (when compared to the cost per student without disabilities). Unfortunately, Congress has never come close to fulfilling that promise. The number of students with disabilities served under IDEA has increased by 25 percent in the past two decades. Yet, the IDEA state grant program was only funded at around $12 billion in 2017. The federal government is only covering 14.6% of the additional cost.
While Daisy is not about privatization, it alludes to it. There’s Hire Psych where the public school outsources its testing and case management of the child’s IEP plan.
Aaron has disguised names and companies in his novel. But groups like Hire Psych exist. Public schools outsource work to these groups. These companies take over and supply workers and attempt to cut program costs.
Outsourcing student information without parental permission is also a concern. What are the credentials of those from outside companies taking over these tasks?
Daisy doesn’t discuss this, but there’s the intentional push to privatize through corporate school reform, diverting school funds to charters, private, even parochial schools.
It isn’t a coincidence that states first push voucher plans to parents of students with disabilities. They will be the parents most dissatisfied with public schools reneging on the promise of IDEA. Local schools are thereby able to shirk their legal responsibility. Tax dollars will be diverted to outside schools.
Parents of children might find an acceptable charter, private, or parochial school, but these placements are sketchy, and accountability is questionable.
Daisy Delivers the Rallying Cry for 2020
Whoever reads Daisy will be compelled to look differently at what public schools should be about.
The hope for parents, for 2020, is that IDEA must be funded, and public schools held accountable for creating a welcoming and vibrant special education program that serves all students who need it. It’s the responsibility of federal, state, and local education officials to ensure this occur by monitoring public schools and seeing that funding goes to those individuals committed to helping students. Parents should not have to police their public schools.
A commitment to students with disabilities and a belief that with the best assistance in school all children will thrive is what’s needed. Schools need a continuum of services and support for teachers who work with children with disabilities in general education inclusion classrooms.
Parents want ethical, well-prepared, degreed professionals who care about their child and treat their child and them with respect. They want school psychologists, principals, and special education district officials who know something about the disabilities found in children in their schools. They should be supportive of parents.
Teachers and staff should be seen as confidants, team players for the child, not enemies. They should have reasonable class sizes, resources, and support staff that are capable and engaged.
There are attentive teachers who do a great job assisting students. This book is mostly concerned with administrators who intentionally deny students services.
Parents also want school boards that don’t shun parents when they bring their concerns to meetings.
This is the hope for 2020, for 2021 will be too late. For many parents, 2020 is already too late. The promise of IDEA must be renewed as soon as soon as possible. This is the time.
Aaron provides a list of ways parents can effect positive change in their schools. This includes demanding that the school district provide appropriate training to staff and that they accept responsibility for the appropriate identification of students for services.
Public schools are the place to support and care for students with disabilities. To give students hope for their futures. It was the promise of P.L. 94-142 and now IDEA. America must keep its promises.
I know that there are many students who do not get the services they need and I appreciate the battle cry that the funding is critical to provide the services. I want parents to know their rights and I want students to get what they need. I also wish that we had balance in what we say. There is so much media attention with stories like this and little said about places where the services and supports are in place. I know they exist because I am one of those special education teachers. I advocate for my students every day, assure they have the services they need, and I work damn hard to do it.
Nancy Bailey says
Thanks for your comment, Connie. The book is mostly about administrators and those in charge of determining who gets services. I added more to the post to recognize those teachers who do a good job. For the record, the parents I know who are upset with schools are usually not angry with teachers. It is the administrators who deny their child services. I taught special ed. too for years. Shaking hands here.
J. Galen Wright says
Thank you for this clear and concise review of Aaron Wright’s book. As Aaron’s father, I ached for him each time I read his book and as he and his family had the doors of education slammed shut by disingenuous gatekeepers. Magda’s parents are truly amazing. They would not have had to face such challenges had their public schools lived up to PL 94-142’s intent, a bitter irony for me as someone appointed to write the first Master Plan for the delivery of services in the county in which we resided in 1975.
Nancy Bailey says
Thank you for your comment! How interesting.
I began my teaching career in 1975 and there certainly was much hope at that time. I too am disappointed at how PL 94-142 has been cast aside. I hope Aaron’s book will continue to enlighten parents and educators.
Stephen Karaffa says
As a teacher, school board member and grandfather of a child who has autism I can totally relate to the system not working. My daughter was having problems with getting services for her son and the school’s answer was to call the police when my grandson acted up. It wasn’t until myself, my wife (also a teacher), my oldest daughter ( special education teacher) and daughter in law who’s an attorney all started attending IEP meetings that the district realized we weren’t going to let them BS us, they even had their attorney start attending the IEP meetings. To make a long story short, we got the services my grandson was entitled to, he has been placed in a alternative school in which he is doing great! Other parents are as educated as to how to fight the system and that is what districts hope for. I’ve asked all my fellow board members to read the book and I know a number of them have ordered it.
Rick B says
Public schools turn a blind eye to dyslexia. This should be a national scandal.
Nancy Bailey says
I think there’s a conversation about dyslexia, but this is about autism. No dyslexia mentioned here. Thanks, Rick.
I’m begging for assistance with getting my 14 daughter diagnosed with Autism the proper school setting. Girls present much differently then boys but my district fails to realize this. Can anyone help me with this? We live in Suffolk County, NY. I’ve been trying to fight the district for years & now she’s just lost in the system!
Nancy Bailey says
This is an old post so I’m not sure anyone is drawn to it lately.
I’m also not sure how to help you. Feel free to email me and I will try to better understand your situation and see if I have any advice.
Hang in there.