As the mother of a child with special needs, I often spend the majority of my day filling out insurance forms to get reimbursed. I can spend hours on the phone trying to find out why my child’s health care coverage was denied. Usually this is due to a mistake, but there are other times when we have to overcome obstacles.
I was told that if my child does not demonstrate sufficient growth, coverage for his treatment will stop, even though there is research-based evidence that therapy is the only treatment for some of his conditions. She is six years old and in first grade, which makes it even more difficult to understand that someone so young could be denied services to improve the quality and journey of her life.
My daughter has autism, ADHD, and several speech disorders, including a neurological condition called apraxia of speechwhich impacts the neural pathways that send messages to produce sounds and recall words – which seriously impacts one’s intelligibility – as well as global dyspraxia, which impacts the general coordination of fine and gross motor movements. Apraxia is also associated with a high likelihood of language-related learning differences that can impact reading, writing, and mathematics. When speaking to insurance companies, I must be a strong advocate and not accept the delay and denial game 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 work day several hours early to take my child from school to his therapy appointments, sometimes four or five days a week. Well-meaning friends and colleagues suggested I make up the night hours.
Any parent of a child with special needs knows this is a joke. There is no energy left at the end of the day. Due to the demands of navigating these systems and being a constant advocate, I only accept part-time and contract work.
Conversations in pediatricians’ waiting rooms confirm that I am not alone. I’ve met many moms over the years who left dream jobs and accepted career slides in order to provide for their children.
Our system for children with special needs is broken and it is not serving our children well.
The amount a state spends to educate a child with special educational needs varies widely and can average up to $24,443 per year depending on location. Districts pay significantly more for private placements of students with complex needs. However, we rarely hear about the costs imposed on families, because keeping these costs invisible prevents us from holding systems accountable for meeting the needs of our children and families.
And the costs for families are significant. Students with complex needs are often recommended to seek private speech, physical or occupational therapy to supplement the modest amount provided at school.
There is also the cost of assessments, which provide essential information to guide services and accommodations that help children access their school programs. Without an assessment to document clear needs, it is almost impossible to advocate for your child’s best interests.
Yet obtaining an assessment is a major challenge. In the Washington, D.C., area, for example, the delay in an educational evaluation from the District of Columbia public schools was more than a year when we requested one for my daughter; going through one of the hospital systems that accept insurance requires a wait of one to two years.
Some families have no choice but to remain on waiting lists, meaning their children will wait years to receive appropriate services at school since assessment results must then be translated into individualized educational programs (IEPs).
Other families choose to conduct private evaluations because they can be scheduled within a few months. In my experience, private evaluations cost around $5,000 each and are rarely covered by insurance, meaning they are limited to families of considerable means.
From these two examples – therapy and assessments – it is clear that families find themselves in complex systems and make difficult decisions based on their financial means and the needs of their children. There is usually one person in the family, most often the mother, who does the heavy lifting: identifying specialists, scheduling appointments, coordinating appointments around school and other activities, and battling insurance companies to cover their children’s care.
This additional work requires a lot of time and mental capacity.
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To be clear, I have no regrets. I am fortunate to have a part-time job that I love and I can participate in my child’s tremendous growth thanks to the hard work she puts into her various therapies.
At the same time, I cannot help but be furious 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 imposing such a high financial, personal, and professional cost on families – especially mothers.
We must reduce wait times and increase our capacity to provide more services in schools by creating pathways to train more specialists in educational psychology, speech therapy, and occupational and physiotherapy. We also need to overhaul our health insurance system to eliminate the games that corporations play and the barriers to accessing therapeutic treatments for children.
We must demand more and not accept that this work falls to families when systems do not work.
For all the families doing this work, I see you, I feel you and I are right to be angry and frustrated while advocating for your child’s best interests. I also believe that systems can do better.
Elizabeth Davis is a postdoctoral fellow at EdPolicyBeforeGeorge Mason University.
Contact the opinion editor at opinion@hechingerreport.org.
This story about raising children with special needs was produced by The Hechinger reportan independent, nonprofit news organization focused on inequality and innovation in education. Register with Hechinger weekly newsletter.
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