In June 2019, I was diagnosed with Stage 1 Breast Cancer. I worked with an amazing team of providers and luckily have an excellent prognosis for full recovery. The time from my first suspicious mammogram to an appointment with an interdisciplinary cancer-care team was five weeks. I am grateful for the care that I received and thankful to the staff at University of Washington Medicine and Seattle Cancer Care Alliance for making a difficult situation as easy as it could be.
Of course, I am well aware that the timeliness and quality of my care is due in part to the privilege of being a well-educated, white woman with outstanding medical insurance. It is also due to the privilege of my disease: breast cancer is a disease that people talk about, walk for, and wear and buy pink products to support treatment, awareness and a cure. And for the most part, its treatments are covered by medical insurance.
Throughout this process, I have been thinking about families that I work with who experience a very different journey through diagnosis, accessing treatment and patient navigation. As a board certified behavior analyst, I work with young children with autism spectrum disorders and related disabilities. The pathway that these families travel to get a diagnosis and then to find and pay for necessary educational, medical and therapy services differs from my experience across almost every dimension: My pathway was well defined with multiple road signs along the way; theirs is vague and disjointed, full of unexpected detours and hazards. But it does not need to be this way. The diagnosis, treatment and patient navigation for children with autism spectrum disorder and related disabilities could be improved if institutions worked together and these services were adequately funded.
Once a family suspects that their young child has a developmental delay, their first stop is often their pediatrician. The importance of development during the first five years of life is well documented, yet many parents with developmental concerns about their children are still told to take a wait-and-see approach. From the time parents first share concerns about their child’s development until they get a diagnosis, the average wait time is 1.7 years. For parents of color or who use Medicaid or are uninsured, these waits are even longer.
After the diagnosis, their wait continues. Parents are told that early, intensive intervention is important. The reality is, however, that this evidence-based service is not readily available. Families report long wait lists for services that the professionals tell them are essential to facilitate their child’s development. At the same time, parents are struggling to attempt to make sense of the maze of providers, agencies, recommendations and information.
My experience as a cancer patient taught me that we know how to support patients through complex diagnosis and treatment. The fact that we do not provide these services to families of children with disabilities is a matter of priorities and funding that backs up those priorities. It is time for medical and education providers to work together to provide timely diagnoses and treatment to children with developmental disabilities. After 55 years, it is time for the federal government to fully fund the Individuals with Disabilities Education Act (IDEA). It is time to break the silos of diagnosis and treatment, and provide comprehensive education and therapeutic services for every child who needs them, when they need them.
Quality and timeliness of diagnosis and care should not be related to race, culture, language or ZIP code. If children need services, we can provide them, if we are willing to do so. Washington state can set an example by establishing a comprehensive system of early diagnosis and high-quality care for all people with disabilities. Our citizens deserve it.