Every Wednesday afternoon, Gillian Gordon-Smith drives to her 11-year-old daughter’s school in Mountlake Terrace, picks her up from class early and heads south to Pioneer Square for a weekly therapy appointment. She budgets more than an hour for the stop-and-go trek along State Route 99, through the tunnel — and the toll — past the stadium and looping back to downtown, where she then scouts for street parking.
But that weekly commute pales in comparison to her arduous journey just to find a good child therapist, says Gordon-Smith, a substitute teacher.
In search of support for her daughter’s ADHD and school struggles, Gordon-Smith combed online directories, made more than a dozen calls and consulted a school district placement agency to find a child therapist. Ultimately, she posted about her search for local mental health counselors to a social media group, from which a trail of personal referrals ultimately led her to the Pioneer Square clinician. Since that therapist does not accept insurance, the family pays out of pocket and then submits a month’s worth of bills to the insurance company for lower out-of-network reimbursement.
Gordon-Smith’s quest didn’t stop there, however. Her daughter required a full neuropsychological evaluation, an appointment that required even more calls and placements on wait lists — some with a wait of up to two years. After an eight-month wait, the psychologist pinpointed an additional three diagnoses: autism, depression and anxiety.
“How much time did we lose that we could have been working on these because of the system?” she asked.
These challenges accessing pediatric mental health services are widespread, reflecting a confluence of factors impacting parents throughout the Puget Sound region and beyond. While nearly 1 in 5 children in the United States have a mental, emotional or behavioral disorder, only about 20 percent receive care from a specialized mental health care provider, according to the Centers for Disease Control and Prevention. Even with the pandemic creating additional mental health needs and backlogs, more and more providers are forgoing the paperwork hassles and typically lower payments from insurance companies. Parents, often at the height of their child’s mental health crises, are left scouring the internet in search of nearby providers who accept insurance and can address their children’s needs.
“It seems impossibly hard,” says University of Washington psychology professor Shannon Dorsey. “There are huge inequities in who can access care.”
Even with insurance, families pay cash
Families interviewed for this story shared accounts of time-consuming internet searches, unanswered phone calls and lengthy wait lists. One parent estimated she spent 20 hours seeking a therapist for her child. Faced with outdated information, a local mom created her own makeshift 30-name provider directory in the form of a Google document, which she discreetly shares with trusted friends and acquaintances. In an effort to bypass wait lists, even people with health insurance have decided to pay cash.
Take Susan Hall, who struggled to find a provider who would accept the family’s military insurance. She decided to pay out of pocket for her son’s weekly therapy sessions in order to select the clinician who could best address her son’s needs. The Seattle-based provider was willing to adjust her rates on a sliding scale based on what the family could afford.
Like Gordon-Smith, Hall also sought a neuropsychological exam for her son, who is “twice exceptional,” that is, intellectually gifted with learning challenges. She wanted an accurate diagnosis to ensure he was receiving adequate school-based support, such as help moving between classes. As she made nearly a dozen calls, she learned of wait lists that were up to two years long. Hall jumped on the first opening after a frustrating 13-month wait, paying $4,000 for a provider who didn’t take insurance.
“Every year makes a difference in the child’s life,” she says. “My child could have had more support.”
Local mom Angela Agelopoulos also decided to pay cash for her seventh-grader’s talk therapy in order to secure a spot with a desired provider. Agelopoulos would still like her son, who has ADHD, to see an occupational therapist, a specialist who could hone organization and executive functioning skills. Since she’s already paying $260 per session for therapy, though, she joined a wait list in the hopes of using her insurance. Two years later, the family is still waiting.
“It has given me a lot of anxiety,” she says. “I know he needs that support. Why can’t I find someone who takes insurance?”
What are the logistical hurdles?
As the owner of Seattle Counseling and Wellness, a 20-clinician practice that accepts insurance, Agelopoulos knows the likely answer: Insurance typically pays less and brings additional logistical hassles. At her practice, for example, private insurance pays about $120 for the published $200 hourly rate.
As a psychologist, Agelopoulos has spent hours waiting on hold to figure out if a client’s insurance benefits will cover the appointment. That’s a hard sell for many providers, especially when there are plenty of people, like Gordon-Smith, willing to pay cash, or pay up front and submit out-of-network reimbursements. As a result, the providers that do take insurance often experience higher demand.
Children’s schedules can also complicate access challenges. Families are often unwilling to have their child leave school for the appointment, preferring the coveted after-school spots. Plus, there are fewer providers accepting young patients. From the clinician’s perspective, pediatric mental health can be more labor intensive than working with adults, with unpaid time spent coordinating with teachers and parents.
For the more than 800,000 children who have Apple Health, the state’s version of Medicaid, provider reimbursement rates are typically even lower than private insurance, which can contribute to longer wait times. At the same time, the government has rigorous rules regarding wait times and care navigation, which can improve access and reduce wait times, explains Jessica Molberg, the senior director of behavioral health services for Coordinated Care, a managed-care organization for Medicaid beneficiaries.
Efforts attempt to ease demand
Some efforts are in the works to improve the mental health backlog and ease the high demand. For example, Coordinated Care is investing in community college scholarships to improve the flow through that mental health practitioner pipeline, Molberg says.
Researchers are also examining a number of other measures that could change mental health delivery, such as promoting short-term sessions versus ongoing care, says Dorsey, the University of Washington professor. Other efforts are exploring the use of trained community members who can deliver high-quality mental health interventions and bolster social-emotional support for all students in school settings. The pandemic-related changes in telehealth reimbursement show promise in improving access in underserved areas, such as rural regions of the state, Dorsey adds.
For now, parents in need of child mental health services will likely continue to face a tough road ahead. The stress of finding a provider often comes at a time when parents are already facing challenges at home and school, making the search and decision making that much harder.
The experience of searching for a therapist and waiting for an evaluation has given Gordon-Smith empathy for the other families still struggling to navigate a complex system. “All of these families need help and don’t know what to do,” she says. “Why is our system so broken?”
