Advocacy Perspective: During Black History Month, A Call To Action To Advance Health Equity

Black History Month is a time to honor the resilience of Black leaders who have come before us and mobilized movements to eliminate racial injustice, in an effort to make our country and our world a better place. It is an opportunity to celebrate the legacy of excellence within the Black community. But I also see it as a call to action to continue the work to combat racism, particularly as it relates to health and eliminating racial and ethnic health disparities.

Prior to joining Autism Speaks in the summer of 2022, I worked on Capitol Hill for over seven years, including five as a congressional aide to Senator Sherrod Brown (D-OH). Specifically, I worked to spearhead efforts to introduce a resolution declaring racism a public health crisis in the Senate 2020 and 2021. The Covid-19 pandemic underscored the racial inequities in our healthcare system – highlighted by the fact that hospitalization, infection, and mortality rates were disproportionately high for communities of color, even though they make up a smaller percentage of the population.

But even prior to the pandemic, advocates were sounding the alarm about health disparities within the Black community, most notably the Black maternal health crisis. Black mothers are two to three times more likely to die from childbirth complications than white mothers. Black women also experience higher rates of severe maternal morbidities and challenges during pregnancy and delivery. The data also illustrate higher rates of preterm birth among African American women and higher rates of mortality among Black infants. For these reasons, I was proud to work with leading maternal health advocates to introduce legislative efforts to strengthen healthcare coverage for low-income women, being very specific to call out the experiences and needs of African American women.

Research also shows the prevalence of preventable chronic health conditions within vulnerable and underserved communities due to socio-economic factors that contribute to poor or worsened health outcomes. No person should ever have to choose between buying groceries or paying for life-sustaining prescriptions or be worried about how to navigate getting to their nearest primary care physician (which may be miles away). But these are decisions members of historically marginalized and underserved communities must make every day. To help address these gaps in access and coverage, I’ve worked with key stakeholders to advance legislative measures to strengthen Medicaid coverage for low-income individuals. Research also shows that Medicaid beneficiaries are overrepresented by low-income communities and people of color, experience higher rates of chronic conditions, and are at higher risk for adverse health challenges.  

Autism Speaks was a frequent flyer in my office on the Hill. I often met with a very diverse group of AS ambassadors. They not only advocated for the autistic community but for health equity generally. I saw as they pushed to improve and strengthen Medicaid coverage and urged Members of Congress to fulfill the promise of the Affordable Care Act. So, I was particularly drawn to the opportunity to join the organization as a Director of Public Policy on our Advocacy team.

Now, as we learn to live with COVID, I am proud to help Autism Speaks continue its work to highlight the intersectionality between what it means to be a person of color and autistic. I think it’s important within those efforts - to center the experiences of the impacted – to ensure we are not only being representative of those diverse voices but also being inclusive. It is with that inclusion and those diverse voices at the table that we can truly start to establish a more impactful effort that gets to the historical context of the barriers (like gender, racial, and class biases) that continue to pervade our structures, policies, and day-to-day lives.

Specifically, we still see high rates of Black individuals being diagnosed later in life, just like how it was for Autism Speaks self-advocate Ashley who shared her story here. A recent study from New Jersey also found that diagnoses for autistic Black children are severely delayed compared to diagnoses for white children – preventing timely access to quality autism related services and resources. Because of these delays – Black autistic children are oftentimes unable to benefit from early childhood interventions – that are important for development – and may require more intensive services. These data indicate that too many Black autistic children are going undiagnosed - without the services and support they need and deserve. 

Our approach to change this is through community-based services that empower those who are already doing the work. Leaders within the community – who are culturally competent – are best equipped to be responsive to the needs of community members. For years, the Autism Speaks Public Health Team has worked to develop a Caregivers Skills Training model – to teach caregivers of children with autism and developmental disabilities or delays how to use their everyday routines and home activities to best support their children’s communication and behavioral health needs. Our Public Health Team’s work – which has impacted lives in underserved communities around the world and in the U.S. – led to the development of a community focused legislative measure – the Autism Family Caregivers Act. This bill would establish community-based/community-led sites across the country to help implement Caregiver Skills Training programs.

These CST sites provide an opportunity to start doing something new: listen, engage and build trust. Because what we know is that, while important, acknowledging the historical reasons for mistrust – within communities of color – of the medical community is not enough. Steps have to be taken to meet community members where they are. This is fighting racism. And this is where we will find advances in health equity. Our work continues.

About the author Based in the Washington, DC area, Alyssa Brockington Serves as a Director of Public Policy at Autism Speaks. She assists in leading the organization's federal advocacy efforts to improve health outcomes for autistic individuals and enhance home and community-based services. Brockington has several  years of health policy experience. She worked in the Office of US Senator Sherrod Brown and for the American Academy of Family Physicians (AAFP) advocating for health equity and public health infrastructure. Brockington is a proud Alumna of Howard University, where she earned a BA in Policial Science. She later graduated from the George Washington University, where she earned a Master’s Degree in Legislative Affairs.