The Futile Fight

Though I had anticipated a specific progressive order of blog topics, I couldn’t ignore this story when it found its way into my email box. A tragedy north of the border that, while heartbreaking and appalling, is a story about a fight many parents know too well, a fight where this parent finally threw in the towel.

Jeffrey Bostick was a hard working father who loved his family and his 11 year old autistic son, Jeremy. Living in Ontario before moving to Alberta, Canada, Jeffrey struggled and sacrificed to be able to find and pay for the services his son so desperately needed. Jeremy had instances of violent outbursts. When services were available, often times providers refused to stay and terminated treatment, believing his behavioral issues were too severe and leaving the family with few other options. Other times costs became so overwhelming they had to intermittently stop treatment, which is detrimental in its own right for a disorder that relies heavily on consistency. At one point, Jeremy was placed in a group home where he was making notable improvements; a small facility where Jeremy was tended to by two employees, he stayed on the weekdays and was allowed to return home on the weekends. But at $32,000 a month, Jeremy’s stay was short-lived, and the family removed him from the home and looked to the government for aid. Unfortunately, like most programs in the U.S., there were limited facilities, limited personnel, limited funds, and exceptionally long waiting lists to receive assistance in Canada, if you made it so far as to qualify for assistance at all. Finding themselves $90,000 in debt for Jeremy’s care, the Bostick family was given one last option for their son.

The family was told that Jeremy would have to be transferred to a full time lockdown facility. Deena, Jeremy’s mom said this was the point where Jeffrey snapped. After fighting for their son for nearly a decade, making no leeway, and falling through the cracks of the system time and time again, their son was now being ripped from his family, placed in a group home the family did not get to choose and did not even approve of, and left alone, surrounded by strangers. Jeffrey had had enough. He took his son home, locked himself and Jeremy in the basement, sealed off the doors with duct tape and stuffed linens in the vents. Then he opened a container of carbon monoxide and he and his son died together, side by side.

One thing I quickly learned when I began working at my internship was how difficult it was for parents to receive the resources and the assistance to care for their children. Nearly every hour of ABA therapy was fought for tooth and nail, and most times awarded following tireless IEP meetings, due process proceedings, emails and calls between lawyers, and lawsuits. It was a typical sight to see my clinical supervisor perched at her computer researching, emailing, calling, scheduling meetings to fight for coverage. Our kids were almost always denied by their insurance companies and school districts, but concerned for disruption of services, she allowed patients to continue treatment while appeals and decisions were processed. This often meant months of services continuing without funding. A few months after I started, I remember my supervisor venting about an insurance company who denied a patient, arguing he was not autistic. The patient had been independently assessed by a psychologist, a school psychologist, a neurologist, a therapist, and a medical doctor, all of whom agreed unanimously that the patient fell on the AS. A short time before I left the clinic, approximately 9 months later, he was still being denied on the same grounds, but services remained uninterrupted, a costly practice for the clinic, but the right choice, nonetheless. Sometimes bills amounted up to tens of thousands of dollars until we were finally paid, only to be rejected on the next statement, and the fight began again. But most clinics are not like this one. Without funding, providers and vendors shrug off the patients and bid them to return when they find the money, again, leaving the kids helpless.

School districts were no better, and for those unaware, yes, your school districts are obligated to provide services for special needs children under the IDEA, Individuals with Disabilities Education Act, but don’t think a simple law motivates them. Most school districts felt they were more than capable of providing these services to the children, and usually sought out cheaper facilities with under-qualified providers, usually young adults with high school diplomas, some in college, a few places required Bachelor’s Degrees, but such low standards undoubtedly resulted in providers leaving the Bosticks after a few episodes of violence. Inexperienced and unprepared, most people who don’t know what to expect typically run for the door. Treating autism isn’t for everyone, it takes someone with heart and determination. (It should be noted our facility required all providers to at least be enrolled in a Master’s Degree psychology program, about 90% had already obtained their degrees, and bites, scratches, hair-pulling, punches, kicks, and even slamming a clinician to the floor didn’t stop us from working or caring.)

When parents realized the services they were getting were substandard to say the least, they sought out our clinic and funding from the districts. Sometimes parents insisted on placing their children in our school as well after finding their children’s educational needs were not being met in their public district’s special education classes. Nearly each district fought. For parents fighting for our school almost all of them went to due process; for external services such as ABA, Speech, and Occupational Therapy, some meetings took two or three sessions. One IEP I took part in took nine hours over two meetings before the district finally agreed to meet the parents’ requests. That evening, amidst the celebration, my supervisor suddenly interjected “Now we go to fight for this guy”. After a nine hour battle and two months of nerve-shattering preparation that preceded it, I retorted that we should’ve been able to enjoy the small moment of our success. Apologizing, she remarked “we always think what’s next? I got 50 kids to fight for”. And truly, the fight was never over.

As time went on the process became ridiculous, we became circus monkeys, jumping through hoops, singing and dancing to appease our funding sources and continue services for our kids. It wasn’t enough that they were improving, they needed to improve more, or improve faster, and then if they were improving too much or too quickly, the ring leaders then argued that they had made enough progress and didn’t require as many hours of therapy, or should stop therapy altogether. Sometimes they just changed the rules on a whim, to complicate things, or to simply entertain themselves as we scurried to meet their demands. One patient had been receiving speech services through his school district for well over a year, and then began OT services when he began attending our school. Approximately a year and half after beginning speech and five months after starting OT, the school district suddenly determined that our speech and OT specialists were not qualified to provide services because they were COTAs, assistants to supervising licensed specialists. We scrambled to readjust schedules and sessions to accommodate the request for him to meet with strictly licensed providers.

The stress we go through fighting for these kids is immense and overwhelming. In my experience with the IEP, my anxiety was practically debilitating as we went through two months of testing and assessments, every moment knowing that a bad day could jeopardize a test score or a poorly interpreted observation could result in having this child ripped from us. And this was just a snapshot in time, two months out of our lives, when in fact, her parents had been fighting this battle for years, much like every parent had been fighting before coming to us. Most never even knew what they could do, given the limited resources provided to them. My supervisor had been there herself, fighting tirelessly for her autistic son before giving up on the districts and forming her own clinic. I could never fully comprehend the stress, the pain, the anxiety and depression that comes with knowing your child deserves more, should get more, and is suffering through no fault of their own because money-hungry agencies and private insurance companies refuse to do the right thing.

Now, in many states across the US, insurance companies are becoming required to cover ABA services, and the bills have widened the expanse of who can provide these services (MFT interns like yours truly, for one), and many have been beguiled into believing this was the answer to their troubles. While it can certainly make things easier, don't be fooled by the bells and whistles. We are, after all, talking about private health insurance, which, if you've seen Michael Moore's Sicko, you know this is still a dark fight. I imagine most arguments now will fall into step with the previously mentioned patient, fights over whether one has autism no matter who agrees.

While nothing can even begin to excuse the path Jeffrey Bostick took, it can almost be understandable. As a parent, there is no worse feeling than the utter helplessness of seeing your child in pain every day, and there is no darker moment than knowing that no matter how hard you try, you can’t help them, and no one else will either. While tragic and horrific, through the looking glass of crazed desperation, Jeffrey’s act was one of pure love, to save his child from suffering and an apathetic world. Thanks to the people I met at the clinic, I know for a handful of these families, they are getting the help they need. Sadly, it’s a small drop in the perilous ocean of autism.