Medical Racism

Today was World Autism Awareness Day, sparking an international movement of lighting it up blue! But a haze of gloom encased the blue beacon as one doctor revealed that the light of hope in an autistic child's prognosis has a dimmer installed, and the light either shines or flickers thanks to the socially constructed benefits of race and education.

Claire McCarthy, M.D., reported the study's findings on Huffington Post, which were originally published in the journal Pediatrics. Exploring the cases of 6,000 autistic children enrolled in the Department of Developmental Services for California, a common thread was found in children who performed better following treatment: their mothers were white and well-educated, and were not receiving services from Medi-Cal.

Drawing from the school of Environmental Racism, this could be termed Medical Racism: obviously those families who are on government assistance such as Medi-Cal are less likely to receive high quality medical care, and it goes without saying that unfortunately, the majority of lower SES families in low-income neighborhoods are less likely to go to college, less likely to get a high paying job, and more likely to be placed on government assistance programs. It also goes without saying that the majority of these individuals happen to be minorities.

There are many obstacles that these groups face in terms of receiving treatment for their children. First, even if high quality providers of care were covered by Medi-Cal, not many are housed in or around lower SES neighborhoods. Transportation to and from these facilities create a problem as many families do not have cars or cannot presently afford the gas. Second, the coverage from Medi-Cal probably provides minimal hours of treatment per week, possibly 3, whereas private facilities have been known to get insurance companies to cover 10-15 hours of intensive treatment and additional hours from other entities (Lovaas, the founder of ABA, recommended as many as 40 hours for optimal improvement, basically stating "the more the better"). Third, many lower SES families have limited resources and no understanding of their rights, benefits, and assistance programs for having an autistic child, therefore they don't know where to turn or who to ask for help. Most are left with horrible services without knowing how much more they can get.

Though insurance companies are now required to pay for ABA services, Medi-Cal is usually not tied in with companies such as Blue Shield or Anthem. They pay for Regional Center services, and, as with everything else, location is key. One family who recently discovered their child is autistic, resides in one of the downscale areas of Los Angeles. Referred to Regional Center services, they are zoned to seek services from the South Central Branch. Having the reputation of being more frugal with their support, the outlook for the child is not bright. A lower SES agency in a lower SES area is a recipe for lower care, lower qualifications for employees, lower budgets, and lower motivation to fight for these kids. However, regional centers like Harbor, Pasadena, and in cities in Northern California, are more likely to provide higher qualities of care to their clients.

Many parents without education or guidance do not know that under the IDEA law, school districts are required to provide many services these children need, such as ABA, speech, and occupational therapy. If they cannot provide adequate services themselves, they are required to pay out of pocket for the parents to receive services elsewhere. Unfortunately for the lower SES families, even if they are aware of this law, they have difficulty getting quality care. They are unaware that they can request more, and when they do, they usually have a long enduring battle to fight with the district that typically ends in going to Due Process. Of course, the parents lack the resources to retain a lawyer, and they usually retreat from the field, accepting whatever the district throws at them.

Blessed by the opportunities society has afforded them, white mothers, who start out lost like any mother just given their child's diagnosis, typically have more resources to seek information: internet access, access to high quality medical care referrals, finances to pay for services privately, to pay for lawyers to get more services, etc. But does this mean that because of a socially unjust system in our state that children of minorities should not be afforded the same benefits and access to care? As we have so many times in the past, are we now spreading that racism to special needs children who don't know any better and suffer because of it? Are we telling our children that because of the color of their skin, or the misfortune of where they were born that they don't deserve to have a future? To get better? The face of autism is not that of a white child. They all deserve a chance.