The Intersection of Autism Acceptance and Health Equity

By: Dana D’Ambrosio, MS, BCBA, LBA
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Autism acceptance generally means embracing and appreciating—these are verbs—the similarities, differences, strengths, and weaknesses among individuals with autism spectrum disorder (ASD). Embracing and appreciating each person for who they are can empower inclusion and help people develop deeper and more meaningful connections with others.

Often underdiscussed is the relation between autism acceptance and broader health equity initiatives. Payors and providers that make use of health equity initiatives as a framework for autism acceptance are well positioned to develop practical solutions to improve patient outcomes while optimizing cost.

The Relationship Between Acceptance and Health Equity

Embracing and appreciating someone with autism spans well beyond the symptomology behind the diagnostic criteria of ASD. At a moral level, each person has a right to be treated and recognized for who they are. In the language of ethics, this is referred to as being treated as an end in oneself as opposed to a means to an end.

Morally, conversations around autism acceptance and health equity should be reminders of what we already do as well as around ways we can be better. But, promoting acceptance is not just a moral imperative, it’s also a practical imperative for healthcare providers and payors. Promoting acceptance has a direct relation to one of the quintuple aims in health equity.

Achieving health equity is often described as ensuring that members and their families have fair and just opportunities to attain their highest level of health. Practically, achieving health equity means broadening health plan services beyond one-off care delivery.

Achieving health equity requires that health plans:

  1. To embrace and appreciate a person’s current life circumstances
  2. Remove potential injustices around economic, social, and physical obstacles to receiving high quality care
  3. Strategize methods to mitigate and prevent care disparities

SDoH as the Fulcrum Toward Equity

One method whereby healthcare (in)equity can be addressed is through health plans bringing social determinants of health (SDoH) into case management processes. SDoH can be defined as the underlying social, economic, and environmental conditions that contribute to human health and well-being. SDoH often impede effective interventions from having their maximal effect. A lack of conversation around SDoH in the health and well-being of individuals with autism is somewhat surprising given that an estimated 80% of health outcomes are affected by SDoH and go largely unidentified or addressed.

Further, parents of children with autism are already significantly more likely than parents of children with other developmental disabilities and mental health conditions to report difficulty finding and using services, limited care coordination and shared decision making, and adverse family impact.

SDoH further exacerbate health inequities relative to autism diagnosis prevalence and timing. For example, children from minority backgrounds receive an ASD diagnosis 1.5 years older than other children. Compounding this, for the first time since 2000, the percentage of children diagnosed with ASD is now higher among Black, Hispanic, and Asian or Pacific Islander children compared to White children. 

Together these are but two examples that highlight disparities in the duration of time between parents expressing concerns about their child’s development and the time that child receives a definitive ASD diagnosis.

Once diagnosed, access to necessary services and resources also differ along SDoH. For example, one in three children on the autism spectrum live in very low-income households, below 100% of the federal poverty level, compared to one in five children without special health care needs. As a result, these members experience delayed access to early intervention services which is known to have the greatest impact on achieving optimal outcomes.

As noted above, addressing SDoH pays off economically for health plans in addition to meeting moral imperatives for reducing health equities. Healthcare costs for people with behavioral health conditions are 2.6-6.5 times higher than those without such conditions, and health plans that address SDoH have shown a 10% reduction in cost in the second year mean expenditures.

Individuals with autism have higher rates of utilization for both acute care and specialty services, attributing to a 4.1 higher healthcare spend compared to children without ASD. By addressing SDoH and health equity, health plans get a healthier population at a lower cost.

Targeting Health Equity Strategically

It’s one thing to know that health plans should address SDoH and health equity for their autistic members. It’s another thing entirely to know where resources can be allocated toward practical and cost-effective solutions. Many health plans likely know how to strategize around addressing health inequities during service delivery. But there are three critical segments along the autism journey where addressing SDoH can have significant return on investment and that might be overlooked.

Mitigating SDoH and Health Equity Around Diagnosis

The first step in any healthcare journey is diagnosis. Autism can be diagnosed between 12-18 months of age, however, the average age of diagnosis is 4.9 years of age. Non-white children are estimated to be diagnosed between 6 months to 1.5 years older than other children. Health plans can take targeted steps toward health equity by appropriately managing their provider networks to ensure they have culturally representative clinicians capable of diagnosing individuals with autism across all communities.

Mitigating SDoH and Health Equity During the Care Journey

Throughout the care journey, families may continue to experience disparities due to discrimination, fear of stigma, social or cultural rejection, or unawareness. Health plans can monitor individual differences in the above SDoH as it relates to member outcomes resulting from receipt of healthcare services. Tracking and managing outcomes relative to SDoH allows care managers to provide individually tailored supports that reduce barriers in continued access to care.

Further, these metrics can be aggregated across a member network and population health approaches can be integrated to further improve care coordination, care access, incented high quality care, and—ultimately—improved member outcomes. Of note, the negative health effects if disparities extend to caregivers of autistic individuals with parental depression occurring at twice the rate and increasing as the child’s age increases. This further supports the central role health plans play in meeting their fiduciary responsibility toward their members healthcare journey and the importance of taking holistic care approach.

Mitigating SDoH and Health Equity Around Transition to Adulthood

Health plans also need to consider the care of their autistic members through a lifespan approach. With 83% of youth with special health care needs not meeting national Health Care Transition performance measures, it is critical to utilize a structured process of transition preparation beginning between ages 12-14. Here, health plans can help their autistic members be better prepared to transition into adulthood by ensuring their network uses best practices around action steps, measurement of self-care skills, and decision-making supports.

Important statistics here include that young adults are 3.7 times more likely to be admitted as inpatient directly from emergency departments due to complex medical, behavioral, and psychiatric needs; and are 11 times more likely to have mental health related hospitalizations and increased risk of suicide.

Adults with ASD have medical expenditures 4.1-6.2 times greater than those without ASD. Importantly, adolescents’ current health and the trajectory of their transition into adulthood can be significantly improved by targeting everyday life circumstances such as economic stability, access to transportation, health literacy, and community engagement.

Conclusion

Autism acceptance is entangled with health equity, conceptually, and social determinants of health, practically. As we close out autism acceptance month, we join the many health plans helping to create the future of equitable health outcomes for individuals with autism spectrum disorder. It can be as simple as starting to track and understand how their members’ outcomes differ relative to SDoH. Or, it can be as complex as developing strategic initiatives around health inequities surrounding diagnoses, access to care, parent education, community resources, and basic supports.

In so doing, health plans can move from understanding to addressing health equity to fulfill their fiduciary duties toward optimizing the care of their members.

To find out how RethinkFutures collects SDoH, identifies appropriate ABA dosage and aids in optimal outcomes, contact us today.

About the Guest Author

Headshot of Dr. David Cox, Ph.D., M.S.B., BCBA-D, Data Science for RethinkFutures

Dr. David J. Cox, Ph.D., M.S.B., BCBA-D

VP of Data Science

Dr. David Cox leads Data Science for RethinkFutures. Dr. Cox has worked within the behavioral health industry for 17 years. He began working in behavioral health by providing and then supervising Applied Behavior Analysis (ABA) programs for individuals with autism spectrum disorders. After 8 years of clinical work, Dr. Cox went back to school to earn a MS in Bioethics, a PhD in Behavior Analysis from the University of Florida, Post-Doctoral Training in Behavioral Pharmacology and Behavioral Economics from Johns Hopkins University School of Medicine, and Post-Doctoral Training in Data Science from the Insight! Data Science program. Since 2014, Dr. Cox’s research and applied work has focused on how to effectively leverage technology, quantitative modeling, and artificial intelligence to ethically optimize behavioral health outcomes and clinical decision-making. Based on his individual and collaborative work, he has published over 45 peer-reviewed articles, three books, and over 150 presentations at scientific conferences.

About the Author

Headshot of Dana D’Ambrosio, MS, BCBA, LBA, Clinical Development for RethinkFutures

Clinical Development

Dana D’Ambrosio leads Clinical Development for RethinkFutures. She is a New York state licensed and Board-Certified Behavior Analyst. She brings over a decade of clinical knowledge, with experience spanning from direct patient care in various treatment settings to utilization and care management within the payor realm. She specializes in the creation and enhancement of technology solutions utilized by providers and health plans, to ensure best practice, high quality, coordinated care and streamlined review processes for all parties. She received a BS from the University of Central Florida and an MS degree in Counseling, specializing in Applied Behavior Analysis, from Nova Southeastern University.

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