Why Are There So Many More Kids With Special Needs Today Than When I Was a Kid?
What You Don't Expect When You're Expecting
My best friend Lisa and her husband Jeff have been married about 12 years. When they discovered Lisa was pregnant, they were not yet married but decided to do what they'd planned to do all along and tie the knot. What they didn't expect was to have a miscarriage. After numerous miscarriages, Lisa discovered she was again pregnant.
By the time Lisa entered her fifth month of pregnancy, we all started to pray for the safety of both mother and baby during the remainder of the pregnancy. Lisa's doctor started to see causes for concern, so Lisa went on bed rest immediately. Within a day or two, Lisa went into labor.
The delivery was fraught with life-threatening issues for both mother and baby…and then we were blessed with Sweet Baby Boy's arrival. Thankfully, advanced medical technology and skilled medical professionals saved the lives of both Lisa and Sweet Baby Boy.
No Time For the Baby Blues
Upon delivery, the baby was immediately taken to the Neonatal Intensive Care Unit of one of the best hospitals in their state. Known for their international reputation in pediatric medicine, surgery and research, this hospital has more pediatricians than any other facility in their region. While Lisa remained in the hospital fighting for her own life, this desperately-wanted, much-loved child fought for his.
After nearly two weeks in the hospital, Lisa was able to head home and, of course, she wanted to see her baby at the hospital. Making the daily trip 20 miles was physically grueling for her, her heart of a mother knew what it needed in order to beat properly. They could not touch Sweet Baby Boy (who weighed in at just over a single pound and who wore diapers which fit a Beanie Baby). Jeff and Lisa's every waking moment was spent praying for Sweet Baby Boy, wondering about his future, and quite honestly, just getting through each day and celebrating another day with their child.
There was no time for post-partum depression. There was no time to celebrate the end of the school year for these two new parents, both of whom are Teachers. There was only time to be with their baby as often as they could while taking measures to be sure Lisa recovered.
And Then, Life
As Sweet Baby Boy aged, it was evident there would be deficits in certain areas. Non-verbal. A diagnosis of Autism. A diagnosis of Cerebral Palsy. The need for a head shunt. Higher susceptibility to viruses. The need for a variety of therapies. The evident need for life-long care and provision. Fortunately, Lisa had, and has, amazing insurance and they live in a state that requires insurance companies to cover the cost for Applied Behavior Analysistherapies. For families whose insurance does not cover the cost of services, the expense can be life-altering, reaching into the realm of $45,000 per year, and higher.
According to the Centers For Disease Control and Prevention, recent information suggests that approximately one in six children, or 15% of children ages three- to seventeen years of age are affected by one or more disabilities impacting their physical, language, learning, and/or behaviors. According to the American Academy of Pediatrics, rates have increased sixteen percent in the past decade with an apparent increase among families considered to be of higher socio-economic status. Separately, there was a notable increase in rates of neurological developmental disabilities, doubling from nineteen cases in one thousand to thirty six cases in one thousand over a ten year span. The same research suggested that while typically, children who are of a low socio-economic status have a higher rate of incidence for disabilities, the rate of increase among other groups is also noteworthy.
Why the increase? Some research suggests that numbers are up simply because there is now a more clear understanding of Autism Spectrum Disorders and a concise diagnosis in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders that allows parents, caregivers, and professionals to identify a possible issue sooner, prompting them to get an official diagnosis. If this theory holds up, it would suggest that it's just the number of diagnoses that has increased, and not the number of actual cases of ASD.
From the perspective of the World Health Organization, a significant number of people with mental disabilities (between 35% and 50% in developed countries; 76% and 85% in developing countries) received no professional diagnosis and support during the year prior to the WHO study in which data was collected.
Consider this situation from my own family: Marshall is nine years of age. He has a genetic predisposition to mental illness on both his mother's side as well as his father's side. On one side, the immediate generation manifests diagnosed Narcissism and Bi-Polar Disorder. On the other side of the genetic pool, there is also Bi-Polar Disorder, pathological behaviors (lying, etc.) which are chronic, and a few other proverbial items in the bag on both sides of the gene pool.
Marshall has also endured trauma at the hands of a human outside of the family which Marshall's mother knew of and acknowledges she allowed to happen.
Marshall was finally placed in a healthy, loving situation with a family member who is not only a Special Education Teacher but is also a staunch advocate for all people with (and without) disabilities. The family member understands the "system" well enough to get as much as possible out of it. The person has called themselves a "Pit Bull and Lion for those who cannot do it for themselves."
Fortunately for Marshall, this person came along and lined up services and supports for appropriate medical and psychiatric services, got the ball rolling with the school to get the Individualized Education Plan in place... Oh, and gives the kid a crap-ton of love and care.
I promise you, Marshall isn't an anomaly. In my tenure as a Special Education Teacher, I found that situations like Marshall's are becoming the norm.
If mentally unwell people can't or don't seek services, is it because they are choosing not to, or is it because they are not only physically or emotionally disabled, but also financially disabled?
I have seen with my own brown eyeballs how difficult it can be to obtain an appropriate diagnosis for a child faced with a biochemical imbalance… let alone trying to get an insurance company to pay for the extremely expensive medicine needed to correct that imbalance! Then, once the person is on an appropriate medication, often insurance companies will stop paying for that med, or otherwise tell patients they must begin using a different medication-often without warning. This creates a whole new level of havoc as patients and families scramble without enough notification to step down from the original - and still-working - medication. This is objectively wrong.
Why is it that 51%-53% of disabled people cannot afford care in various countries? Even with insurance, prices for services are beyond what most of us can pay, and almost always seems to involve doing the phone call shuffle with the doctors' billing offices and the insurance company. Sometimes it just seems easier to forego treatment.
Mama Doesn't Care Enough To Stop
Before anyone starts sending me nastygrams, hear this: we have a documented drug and alcohol epidemic in this country of ours; anyone who disputes that has lived under a rock for the last five years. In 2012, more than 21,732 babies were born with NeoNatal Abstinence Syndrome. NAS is the group of disastrous issues created when a baby is born addicted to, then has to endure painful withdrawal from, Opioids because their mother consistently used during her pregnancy.
In a longitudinal study performed over 10 years gathering data on post-Opioid babies, issues which manifested in children as they aged included anxiety, behavioral and emotional issues, vision issues, issues with assault, speech/language delays, small head circumference, balance issues, hyperactivity, decreased attentiveness, intellectual disabilities. I will note that the presenters in this resource were careful to point out that Early On programs and other early interventions were a key component to positive development for children in this situation.
According to the National Institute on Drug Abuse, mothers using/addicted to Opiates had babies who stayed in the hospital approximately sixteen days compared to the average stay of two days for a baby born healthy. State Medicaid programs pick up more than 80% of the $1.5 billion annual cost of caring for these babies.
The Talk Show
Social pragmatics…look, Ma! I'm using my first Master's degree! I'm excited to dust off my discourse about discourse.
Earlier today, I was chatting with my Really Smart Friend Kelly about a related issue. She reminded me that getting what we need is all about knowing what to say, how to say it, and to whom it should be said.
Parents with the ability to articulate well and communicate clearly with others have a definitively better opportunity for success when it comes to having conversations with professionals about the needs, or perceived needs, of their child. Crassly stated, doctors are busy and if you don't speak up, they're not going to give a crap. I'll back-peddle a bit. They may care, but the busyness of their day won't be slowed unless a parent speaks up, and speaks succinctly and clearly about what is going on with their child.
Back To the Question…
But have we figured out the WHY?
Have we only figured out a small part of what happens when governments, agencies, families, and individuals are left to navigate the murky waters of systems that are being inundated with a record number of claimants and people receiving services?
So WHY is there a seemingly higher rate of people with special needs and disabilities in 2018? Is it all in our heads, so to speak? Based on some easily accessible information, this hypothesis seems to be true… There is strong evidence pointing to all of the following:
- More advanced medical technologies that make early diagnosis more feasible
- A more widely understood definition of Autism Spectrum Disorders
- People are more savvy and able to better articulate and advocate for their loved ones
- Over-identification of children is an issue
As a Special Education Teacher, my natural tendency is to see things through the lenses of someone who prefers to educate children with a bent toward "What Works For This Child?"
Any teacher worth their salt knows that if there are 20 kids in a room, there are 20 different ways information needs to be taught and 20 different ways it is learned. My other point of reference is that during the era of Grunge Rock when my career in Education began, the classrooms in which I served had fewer children in them. The Offices of Special Education Services were not as busy because there were fewer children placed in Special Education classes-but that's just my personal experience.
We Educators know that moving forward, we will continue to accept those precious children who arrive at our doorway and we are eager to teach and eager to learn. We do our best, we judge them not, we do better than our best each day, and we interact as fully as possible with their caregivers. We create a learning-rich environment and serve them well because we are Teachers.
Latest posts by Mary McLaughlin (see all)
- Accepting Personal Responsibility and Being a Good Teacher-Leader - December 5, 2018
- Musings of Vulnerability From a Fifty-Something Special Ed Teacher… and Step-Parent of a Person With Special Needs - November 1, 2018
- How a Fishing Derby Led to New Friends and New Insights About Making Sure Students with Autism Aren’t Left Out - October 29, 2018