Autism

Begging and the American Medical System

Mel Baggs, influential blogger and autism activist, suffered from a variety of serious medical problems that worsened over time.  On March 28, 2020, she posted the following on one of her blogs.  It is not written in her usual, carefully honed style—she was too desperate for that:

I am going to run out of crucial meds.  This is me shamelessly begging for money. . . . It needs to be real money, not a gift card, because we have to use it at the pharmacy.  If the pharmacy is open.  And it needs to be a whole lot of money because meds are expensive and we are running out of ones that will keep me alive. . . .  Please help please someone help ideally lots of people help.[1]

Mel died less than two weeks after she posted this.  She was 39 years old.[2]

Citizens of other developed countries, where there are national health services, may be shocked at how common begging for money to pay for medication and medical treatment is in the U.S., where we supposedly have “the greatest health system in the world.”  Begging for medical help is completely ordinary, hardly even noticeable here.  Stores routinely have jars on their counters, into which customers can drop spare change to help with “An’twan’s surgery” or “Mimi’s cancer treatments.” Often there are photos of the sufferers taped to the front of the jars to encourage generosity.  Religious and community organizations regularly hold fundraising potlucks and concerts to help families who just can’t afford the treatment their members need.  More recently, those in distress have turned to crowdsourcing, on online sites like GoFundMe.  And it’s important to realize that it is not just the poor who suffer and must beg.  Unexpected medical expenses are the most common cause of bankruptcies among middle class families in the United States, and these families, too, must sometimes plead for help.[3]  But for autistic people, this humiliating exercise is too often futile.  They usually lack the social support networks necessary for survival.


[1] Mel Baggs, “We need real money badly” on her Cussin’ and Discussin’ blog, March 28, 2020:  https://cussinanddiscussin.wordpress.com/2020/03/28/we-need-real-money-badly/.

[2] Neil Genzlinger, “Mel Baggs, Blogger on Autism and Disability, Dies at 39,” The New York Times, April 29, 2020.

[3] Gordon Burtch and Jason Chan, “Investigating the Relationship Between Medical Crowdfunding and Personal Bankruptcy in the United States: Evidence of a Digital Divide,” MIS Quarterly  43:1 (2019), 237-262.

Autism

Race, Autism, and Public Insurance

Recent research has shown that there are significant racial disparities in the way American public insurance programs (Medicaid/Medicare) treat autistic people.

Black autistic children, for example, are much less likely than their White counterparts to receive physical therapy, occupational therapy, 1-on-1 counseling, or case management (to help coordinate services)–even when both groups are reliant on Medicaid.

During the complex transition from childhood to adult Medicaid services, African American youth are much less likely than Whites to receive help from case managers, doctors, and other professionals.

Overall, 52% of all adult autistics using Medicaid have unmet physical or mental health needs. The percentage is even higher for African Americans and Hispanic Americans.

The way autistic people are treated by the American health system is already bad enough. Racial disparities that make things worse for members of minority groups are absolutely unacceptable.

Sources:

Lucy Bilaver, et al., “Understanding Racial and Ethnic Disparities in Autism‑Related Service Use Among Medicaid‑Enrolled Children,” Journal of Autism and Developmental Disorders 51 (2021), 3341-3355.

Teal Benevides, et al., “Racial and ethnic disparities in benefits eligibility and spending among adults on the
autism spectrum: A cohort study using the Medicare Medicaid Linked Enrollees Analytic Data Source,” Plos One (May 25, 2021).

Whitney Schott, et al., “Service Use and Unmet Needs Among Adults with Autism Awaiting Home‑ and Community‑Based Medicaid Services,” Journal of Autism and Developmental Disorders 51 (2021), 1188-1200.

Casey Walsh, et al., “Health Care Transition Planning Among Adolescents with Autism Spectrum Disorder,” Journal of Autism and Developmental Disorders 47 (2017), 980-91.