I’m used to writing as a physician, not as a parent. I’m a pediatrician in Oakland who has devoted my career to working with the underserved children of our community. But as I come to realize that I’ve done a better job of helping and advocating for my patients and families than my own child, I find myself at a crossroad.
Although I specialize in caring for children with developmental, learning, and behavior issues, I was caught completely off guard when my now 6-½ year-old son, Jackson, started developing classic symptoms of autism at around 1 ½ years of age. What I did not expect, though, was that when my wife and I finally got to the point of asking for help in coming to the diagnosis and seeking treatment, help was difficult to find. So much of this journey has been met with a truly amazing combination of indifference and incompetence. It’s a common story but, still, I am grappling to understand how almost 4 years down the road we are still struggling to get Jackson what he needs.
Having worked for Kaiser in the past, I was surprised how little they had to offer us other a short office visit with an “autism expert” and a blood test. Actually, the specialist we saw was more interested in talking about her kids’ problems and successes than ours. Even though she was sure Jackson would turn out to have autism, she offered us no treatment option or direction other than the standard advice of contact the Regional Center evaluation, and the school district after age three.
I did contact the Regional Center of the East Bay. I had referred many of my patients there over the years and even mentioned that in my original phone call, but they never called us back and subsequently claimed we would have to wait the summer to hear from them in the fall. Time past and they never contacted us back so we persisted until we finally had an intake and were assigned a case manager.
After being relatively disappointed by Kaiser and the Regional Center of the East Bay, when Jackson was three he qualified for testing and services by the Oakland Unified School District (OUSD). We were told that he did fall on the autism spectrum and we were given an Individual Education Plan (IEP). Jackson started at Tilden Elementary School in a classroom for children with language-oriented delays, including but not specific to autism. The class, however, was understaffed and became more of a glorified daycare than a therapeutic preschool.
We did what we could to help. Brenda organized a group of friends to paint and refurbish the classroom and she volunteered in the classroom. But when Jackson’s language was not improving and we asked if we could get speech therapy for him, we were told that “he did not have enough speech” to qualify for speech therapy. It’s hard to understand or explain how we could have accepted that answer, but parents tend to trust and accept what is told, for a time. So, we sought outside speech therapy for him not realizing that we had a right to have the OUSD pay for those services.
By chance, Brenda met a therapist, Vicki Wells, MA, who is expert in Applied Behavioral Analysis (ABA), which is one of the most accepted therapies for autism. We hired her to evaluate Jackson and begin an in-home program for him. Within 6 weeks, we saw dramatic improvement, which is documented with video. On her suggestion, we considered enrolling him in the STARS school in Walnut Creek, but when we interviewed there they mentioned that there was a STARS program in the Oakland Unified School District. We were surprised to find that in all of our meetings with the school district that Jackson was never offered this program, despite being a good fit. In all of our meetings with the school district we were never offered access to that program until we asked for and insisted on it. We were amazed that when we finally got him into the class, that there were only 3 other children being offered the program, when there were clearly more who could benefit.
The school-based program was good, at first. However, we had to fight to keep our in-home program going so that Jackson could catch up from a year of stagnation and minimal progress. Eventually, they wrestled away the program from our therapist, the only one who has ever demonstrated rapid and impressive positive developmental progress. And now, this past year, Jackson’s STARS class has been without a supervising teacher, who is responsible for overseeing the program, tracking progress, and deciding what each student needs. Additionally, the standards as to which students belong in this specific program have been relaxed so that children with more severe behavioral concerns have been admitted. As a result, we have seen declines in language and skills, and the emergence of more behavior problems.
Perhaps more than most parents I realize the intensity of educational resources that is required for special needs children. That doesn’t change what I expect, but it has provided me motivation to do my part to support the school system and the community in my own way. As it is, my choice to practice in the community as I do signifies much of that commitment. Indeed, my patients go to Oakland schools and I do my best to help with those that have learning and behavior problems, such as ADHD, by being directly involved with and available to teachers. As most of patients have some form of Medi-Cal insurance and with the long history of poor reimbursement and recent cuts, economic survival is a daily concern of mine and I am in no position to provide services for my child that the school cannot or will not.
Still, I have tried to find ways to directly support the OUSD. I have offered my time and expertise in the area of disaster preparedness. I serve as the Chief Medical Officer and Deputy Commander for a regional federal disaster medical response team. I organized a high level meeting with the Alameda County Emergency Medical Services Agency to liaison and find ways that they could support the Oakland Unified School District with its outdated disaster plan, both for general education children, but especially as it relates to special needs children in the schools. The work I put into that effort and the proposals that I offered, although welcomed by the Community Advisory Committee of parents of special education children, has been ignored by 2 successive directors of special education for the OUSD, until this past week.
Additionally, on campus, Brenda organized a group of friends to paint and refurbish Jackson’s original classroom and she has volunteered in a couple of classrooms.
Beyond that, I sit on various county and local health plan committees that address different aspects of the needs of children with developmental issues. I have sat on a steering committee for a local medial group to adapt recommendations for developmental screening to the pediatrician’s office and have recently applied for grant to implement such recommendations in this time of unfunded mandates and cuts for Medi-Cal reimbursement. Additionally, I am increasingly speaking to medical audiences about autism, screening, and the role of the medical provider as an advocate for the patient and family.
Indeed, about two weeks ago we called for an emergency meeting with our special education coordinator to discuss our concerns. Serendipitously, the meeting was the same day that I delivered a noontime lecture to Family Practice Residency Program for the Contra Costa Regional Medical Center, where I am on staff. That talk was on autism screening and treatment. During the lecture I showed some video of Jackson getting his ABA therapy from May 2007, almost 2 years ago. I had moment to pause when I realized that some of the language and skills he was demonstrating in that video have been lost during this past school year. I showed this video later that afternoon in our school meeting when everything that we have been though these past 3 ½ just came down on me like a ton of bricks.
And this is where my crossroad brings me. For all that we do not know about autism, what is known is that early diagnosis and intervention is critical to outcome. To know this and experience such an insidious pattern of incompetence and obstructionism is both confusing and disappointing. If we can’t get what we need for our child, how are other parents, who don’t have the resources we have, supposed to get their children’s needs met. And, do I continue to work as a primary medical provider to the underserved children of this community and as an advocate in the county, or do I change course so that I can afford to provide the services my son needs now while finding the time to fight for my him to get the services he needs to make up for the unnecessary stagnation and losses we have suffered?