According to the Centers for Disease Control and Prevention (CDC), health equity is a state in which everyone has an equal opportunity to be as healthy as possible. That includes physical as well as behavioral health.
However, achieving health equity has long faced many barriers. People with autism spectrum disorder (ASD) and other intellectual and developmental disabilities (IDDs) are not only more likely to face barriers in physical healthcare but in behavioral health care too. These barriers lead to downstream effects, such as delayed or inadequate care, causing health conditions to worsen. In the case of ASD and IDDs, where early intervention is key, delayed treatment can impact long-term outcomes.,
Drivers Behind Behavioral Health Inequities
People with ASD and IDDs are often marginalized. Behavioral health inequity happens for many reasons, from stigmas about behavioral health to lack of access. Drivers include:
- Social determinants of health (SDOH) – These are non-medical factors that can influence health, like social support, education, neighborhood and physical environment. For example, families living in socioeconomically challenging circumstances may lack the resources to access care or could face related barriers like transportation to and from appointments.
- Racial, ethnic and gender disparities – ASD is equal-opportunity and prevalence rates do not differ across racial and ethnic groups, but white children, particularly of higher socioeconomic status, are more likely to be diagnosed early. Research is ongoing into how autism expresses differently in females, but it’s known girls have been historically underdiagnosed. Likewise, research is ongoing into the relationship between autism and gender dysphoria and transgender identity. For people in the U.S. who aren’t native English speakers, language can present a barrier as well.
- Access barriers – Access issues can stem from SDOH or racial/ethnic disparities, but they also deeply affect many people living in geographies that are rural or where provider services are lacking. More than 80% of U.S. counties lack access to ASD diagnostic resources; stories about families. Being uninsured or underinsured is also problematic, as families may avoid or delay care because of costs.
Key Ways to Make Behavioral Health Equity a Priority
Beyond the moral imperative to make high-quality behavioral health care accessible for all, there are also economic and societal reasons to do so. And it’s well established in health literature that health equity is ideal for economic stability not only for individuals, but the nation as a whole.
Forward-thinking organizations are developing strategies to reduce inequity in their operations. These can range from offering individualized care to ensuring diverse representation in provider networks, to gathering data and investing in clinical research. Some of these strategies and tactics include:
- Driving the conversation about benchmarks and outcomes – Among the many challenges in treating ASD and IDDs is determining when treatment has been successful. Without a universal way to measure success, equity is hard to achieve because there is no standard to measure against. Consensus on the right outcome measures has been lacking when it comes to ASD and IDDs. Catalight has developed wellbeing scales as a proposed umbrella outcome that carries across the highly diverse ASD population and can measure the wellbeing of adults, children and the overall family.
- Fostering a flexible, preference-first culture of care – One-size-fits-all, high-hour applied behavioral analysis (ABA) has historically been the widely accepted gold standard for ASD care. But new research has shown that lower hour ABA and other, less time-intensive therapies are just as effective and may carry additional benefits. A person-centered approach to care means giving families flexible options to choose what kind of care is right for their child.
- Having a strong telehealth program – Telehealth, which is now a routine and highly regarded part of care delivery–can increase access for people who live in rural or underserved areas. As many areas of the country have very few to no providers within reasonable driving distance, telehealth is a great option that helps working families simplify getting care. Telehealth also removes travel time, which allows providers to reach more patience thus increasing access. It also allows therapy to take place in the safe, familiar environment of home and is less intrusive.
- Investing in research and clinical innovation – Flexible treatment options and new innovations in care grow out of institutions like Catalight that are willing and able to make the investment into research and modality design. This goes beyond practitioner-led applied behavior analysis (ABA) and involves treatments and programs that are parent-led, focus on some of the most profoundly disabled individuals and use other frameworks to address areas of need.
- Data collection and analysis – Collecting and analyzing data on client demographics, outcomes and access to care makes it possible to identify disparities and measure progress toward equity. Catalight, with more than a decade’s worth of data, collects this information. It can also be used to help inform expansion efforts and quality improvements.
- Committing to care coordination and case management – Nurse navigators and care coordinators are common in healthcare systems and hospitals, but parents of children with behavioral health care issues are often left to navigate this on their own. Embedded case managers who are knowledgeable about ASD and IDDs can support coordination, ensuring continuity of care and getting families enrolled in the programs that are right for them and can improve overall wellbeing.
Equity in behavioral health care should be top of mind for everyone, but moving the needle won’t happen without specific strategies and tactics in place. For payers, seeking out partners who are both committed to equity and who have practical approaches and plans is the catalyst to creating the changed needed.