Stories

As Autism Costs Rise, CHR Calculates Costs to Families

Stories - Dec 13 2016

By Jill Pope

A four-year study funded by the National Institutes of Mental Health will assess the economic impact of autism spectrum disorder on families.

The Centers for Disease Control and Prevention (CDC) estimates that 1 in 68 children in the U.S. currently has an autism spectrum disorder (ASD). That’s a steep increase from only 9 years ago, when the estimate was 1 in 150 children. And when we consider the estimate of 1 in 2,000 children in 1966, the trend over the last several decades becomes painfully clear.

Whether this marked increase is due to better detection, expanded diagnostic criteria, or simply more cases, we do not fully know. What we do know is that autism can significantly impair a child's ability to communicate and interact with others—and while there is no cure, early diagnosis and treatment go a long way toward improving outcomes.

As the prevalence of ASD has increased, so have its costs to the U.S. economy. A July 2015 study estimated the national economic burden of autism at $268 billion. This is more than the estimated burden of diabetes, which was $245 billion in 2012, and well above the $205 billion estimate for the burden of attention deficit hyperactivity disorder (ADHD). The same study projects that ASD costs will increase to $461 billion in 2025—if ASD prevalence rates remain steady. But if ASD prevalence continues to rise, following the trend of the last decade, its costs could exceed $1 trillion by 2025.

Who bears the brunt of these costs? Health care systems, certainly. But families bringing up a child with ASD also face major costs, including out-of-pocket expenses for medical visits, speech therapy visits, and other services. These families also face substantial time costs that often go unaccounted for. Parents or guardians of a child with ASD often spend many hours managing the child’s condition and coordinating health and school services. They may work outside the home less, or not at all. For parents who continue working, time demands and stress associated with parenting a child with ASD can also lead to employment costs, such as missed work and lost productivity.

CHR Study Will Ask 1,500 Families to Report Costs

In September 2016, CHR Senior Investigator Frances Lynch, PhD, was awarded $2.7 million from the National Institutes of Mental Health for a four-year study to assess ASD’s economic impact on families. Dr. Lynch says she has long believed there was a disconnect between the costs reported by health care researchers and the real-life costs described by families.

“Early on in my work as a health economist, I began to notice that most cost studies focus primarily on the costs related to the health care system, such the cost of prescription drugs or doctor visits. Yet, when I talked with families of children with mental health or developmental conditions, what I heard was how difficult it was to care for these children and how much time and money families had to invest. This really inspired me to try and develop methods that could better capture these ‘family’ costs.”

To gather accurate information on the costs these families face, Dr. Lynch’s study will recruit 1,500 families of children ranging in age from 3 to 17 from Kaiser Permanente Northwest, KP Northern California, KP Hawaii, and the OCHIN network of safety net clinics. Dr. Lynch expects that more than 50% of families will come from non-white backgrounds, and that at least 25% will be very-low-income families that use public health insurance or are uninsured.

The study will compare costs among three types of families—500 families caring for a child with ASD, 500 families caring for a child with asthma (a different chronic condition that may also be costly for families), and 500 families caring for a child with no significant health problems. The study will follow these families for one year and survey them at three-month intervals, so that parents and guardians can recall and report costs as accurately as possible. They will respond to questions in the Family Economic Impact Interview, a survey Dr. Lynch designed.

“I developed this instrument because I was very concerned about making sure we are paying attention to the full impact of autism and other mental health and developmental conditions on families,” says Dr. Lynch. “Current instruments do not capture a large portion of the impact on families, and this could cause public policy makers and clinical providers to make policies that unintentionally add more burden or cost to families.”

Previous reports of family costs for children with conditions such as cancer suggest that costs are substantially greater when a child has a significant health condition. So far, most studies on the cost of ASD have examined only short-term health care costs. What Dr. Lynch and her team learn from these 1500 diverse families will create a much fuller, more accurate picture of the actual costs of caring for a child with ASD. These findings can, in turn, inform workplace and government policies that recognize the full impact of autism and better support families. These might include new tax breaks or incentives, interventions to help parents with caregiving, flexible work schedules, or expanded leave policies.

About Dr. Lynch:

Frances Lynch, PhD, MSPH, is a health economist whose research focuses on the organization and financing of care for people with mental health and substance abuse conditions. Dr. Lynch has extensive experience conducting economic evaluations of complex behavioral interventions including cognitive behavioral interventions for depression prevention, eating disorders, and anxiety disorders. Her work has focused on mental health and developmental conditions in children. She has conducted several studies that have included families of children with autism. These include qualitative studies, talking with families about their experiences caregiving for their children with autism, surveying families with children with autism, and studying the use of health care services by children with autism.