A driving force for health equity

As Autism Cases Increase, OCHIN and Kaiser Permanente Recognize the Cost to Families

By April Lee, Research Associate

The Centers for Disease Control and Prevention (CDC) recently released new autism prevalence rates, indicating that 1 in 59 children had a diagnosis of Autism Spectrum Disorder (ASD) by age 8 in 2014, a 15% increase over 2012. This is consistent with the rising trend of autism rates in recent years. In addition, the gender gap is narrowing (due to increased rates among girls), as is the ethnic gap (due to increased rates among ethnic minorities, particularly black children). The increase in prevalence among these populations is being attributed to improved identification of autism in girls and increased awareness and screening in minority communities, although it’s impossible to rule out a true increase in the number of children with ASD.

Regardless of the cause, this trend means that more and more families are being impacted by the significant economic burden and extensive caregiver strain that accompanies a diagnosis of ASD. Families bringing up a child with ASD face extensive financial costs, including out-of-pocket expenses for medical visits, speech therapy visits, and other services. Parents or guardians also face substantial time costs in researching treatment options, managing the child’s condition, and coordinating health and school services. They also often incur employment costs, which can include missed time from work and lost productivity.  

Research to date on the financial impact of ASD in the U.S. has focused primarily on costs directly related to the health care system, such as the cost of prescription drugs or doctor visits, and largely ignoring costs from the family perspective, leading to public policies and social services that don’t fully recognize or address the true economic burden that families of a child with ASD carry. This can be particularly devastating for low-income and socially and medically underserved families.

In an effort to bridge this gap, OCHIN and Kaiser Permanente Center for Health Research (KP-CHR) are teaming up to gather accurate information directly from families. Understanding Family Economic Impact of Chronic Child Health Conditions, or “r-Kids”, is a four-year research study funded by the National Institute of Mental Health to assess ASD’s economic impact on families. It is led by Frances Lynch, a health economist and Senior Investigator at KP-CHR who has dedicated her career to conducting research that can inform public policy and increase awareness around complex health conditions, such as mental health, substance abuse, and developmental conditions in children. OCHIN is honored to work with Dr. Lynch and her team to bring a voice to families raising a child with ASD, and highlight an issue that affects so many families within the OCHIN collaborative.

For this study, 1,500 parents or guardians of children ranging in age of 3-17 will be recruited from KP-CHR Northwest, Northern California, and Hawaii, and from participating OCHIN member organizations. The study will compare costs among families caring for a child with either ASD, asthma (another chronic condition that can also be costly for families), or with no significant health problems. Parents or guardians who choose to participate will be followed for one year and asked to complete an online (or phone, if preferred) survey every three months on costs incurred during the prior three months. Participants will receive compensation for each survey completed. The survey includes questions from the Family Economic Impact Interview, an instrument Dr. Lynch designed to capture broader family costs associated with mental health and developmental conditions.  

OCHIN’s recruitment of patient families will be ongoing until March, 2019. If your health center is interested in extending this research opportunity to your patient families, please contact April Lee at leean@ochin.org or at 503-546-4288. With more families participating, we’ll be able to gather better data, and will be able to create a much fuller and more accurate picture of the true economic impacts of ASD. 

In addition, findings from this study will provide essential information and guidance for designing healthcare, workplace, and social policies that recognize the full impact of autism and help to alleviate costs for families with the greatest needs.

We would like to thank the OCHIN member organizations that have partnered with us on this study and allowed our research team to invite eligible families from their clinics to participate. This work would not be possible without your tireless dedication to providing excellent care for vulnerable patients. We value your service.