As a mom of a child with special needs, I often spend the majority of my day filing insurance forms for reimbursement. I can spend hours on the phone trying to find out why coverage was denied for my child’s therapy. Usually, it is due to an error, but there are other times when we are required to jump through hoops.
I have been told that if my child is not demonstrating sufficient growth, coverage of her treatment will stop, even though there is research-based evidence that therapy is the only treatment for some of her conditions. She is six years old and in first grade, which makes it even harder to comprehend that someone so young could be denied services to improve the quality and trajectory of her life.
My daughter has autism, ADHD and several speech disorders, including a neurological condition called apraxia of speech, which impacts the neural pathways that send the messages to produce sounds and recall words — severely impacting her intelligibility — as well as global dyspraxia, which impacts the general coordination of fine and gross motor movements. Apraxia is also associated with a strong likelihood of language-based learning differences that can impact reading, writing and math. When speaking to insurance companies, I have to be a strong advocate and not accept the delay-and-deny game that they play with families with complex needs.
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In addition to fighting with the insurance company, I often have to end my paid workday several hours early to take my child from school to therapy appointments, sometimes four or five days a week. I have had well-intentioned friends and colleagues suggest that I could make up the hours at night.
Any parent of a child with special needs knows that this is a joke. There is no energy left at the end of the day. As a result of the demands of navigating these systems and being a constant advocate, I only accept part-time and contract work.
Conversations in pediatric therapists’ waiting rooms confirm that I am not alone. I have met numerous moms over the years who have left dream jobs and accepted the derailment of their careers in order to support the needs of their children.
Our system for children with special needs is broken, and it is not serving our children well.
The amount that a state spends to educate a child with special education needs varies widely and can average up to $24,443 per year depending on location. Districts pay significantly more for private placements for students with complex needs. We rarely hear about the costs imposed on families, however, because keeping these costs invisible prevents holding systems accountable to deliver for our children and families.
And the costs for families are significant. Students with complex needs are often recommended to seek private speech therapy, physical therapy or occupational therapy to supplement the modest amount provided at school.
There is also the cost of assessments, which provide critical information to guide the services and accommodations that help children access their school curriculums. Without an assessment to document clear needs, it is nearly impossible to advocate for the best interests of your child.
Yet, getting an assessment is a major challenge. In the Washington, D.C., area, for example, the backlog for an educational assessment from District of Columbia Public Schools was over a year when we requested one for my daughter; going through one of the hospital systems that accepts insurance requires a one- to two-year wait.
Some families have no option but to stay on the waiting lists, which means their children will wait years to receive appropriate services at school since the assessment results will then need to be translated into individualized education programs (IEPs).
Other families opt to pursue private assessments because these can be scheduled within a few months. From my experience, private assessments cost around $5,000 each and are rarely covered by insurance, which means they are limited to families with considerable means.
Just from these two examples — therapy and assessments — it is clear that families are navigating complicated systems and making tough decisions based on their financial means and the needs of their children. There is usually one person in the family, most often the mom, who does the heavy lifting of identifying specialists, scheduling appointments, coordinating appointments around school and other activities and battling insurance companies to cover their children’s care.
This additional labor takes a heavy toll on one’s time and mental capacity.
To be clear, I have no regrets. I am fortunate to have a part-time position that I love, and I get to be involved in the tremendous growth my child has shown through the hard work she puts into her different therapies.
At the same time, I cannot help but be enraged that, given the amount of resources available in this country, and in my city in particular, we cannot design systems to meet the educational and developmental needs of children without placing such a high financial, personal and professional cost on families — especially on mothers.
We need to reduce wait times and increase our ability to provide more services in schools by creating pipelines to train more specialists in educational psychology, speech pathology and occupational and physical therapy. We also need to overhaul our health insurance system to eliminate the games companies play and the obstacles to accessing therapeutic treatment for children.
We need to demand more and not accept that this work falls on families when systems do not deliver.
For all the families out there doing this work, I see you, I feel you and you are valid in being angry and frustrated while advocating for your child. I also believe systems can do better.
Elizabeth Davis is a postdoctoral fellow at EdPolicyForward, George Mason University.
Contact the opinion editor at opinion@hechingerreport.org.
This story about educating children with special needs was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education. Sign up for Hechinger’s weekly newsletter.
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