On a weekday evening last October, Anya, a vibrant and astute college student from upstate New York, and Cody, a friendly and funny high schooler from Long Island, came together with a diverse group of caring parents, youth, behavioral health professionals and advocates to discuss a pressing issue for families in New York: youth mental health. 

This event was the Campaign for Healthy Minds, Healthy Kids’ (HMHK) annual Community Speakout, where members of the campaign’s Youth & Caregiver Council spoke to an audience of allies and campaign members about behavioral health advocacy and their personal experiences. Anya and Cody were two such speakers and, listening to their stories, it was hard to imagine that these two young individuals had endured the profound hardship they shared at the speakout that evening. 

The annual Speakout provides a platform for those who have ties to the youth mental healthcare and substance abuse care (behavioral healthcare) systems to voice their concerns and priorities. It is also an opportunity for courageous young people, their caregivers, and others to tell their stories to the community in hopes of inspiring systemic change. The Campaign, co-led by CCC and Families Together NY with support from JCCA, Long Island Families Together (LIFT), and NYS Coalition for Children’s Behavioral Health, organized this event as a powerful show of advocacy collaboration and the serious nature of a prolonged issue in healthcare access for our state’s younger generations.  

When it was Anya’s time to tell her story, she bravely shared how difficult it was to receive help for her anxiety and depression symptoms during the COVID-19 pandemic. “It didn’t matter how many times I screamed and begged. It didn’t matter how many panic attacks I had, or how many times I relapsed in self-harm. Nothing mattered,” she recalled. “I did not matter.” 

The issues that Anya encountered, including long waitlist times and mental healthcare staff turnover, are unfortunately all too common in New York.  Anya even remembers being told at one point that “there are people who need services more than [her]”. At her SUNY college campus, finding counseling proved to be a very difficult endeavor, as there were only two to three professionals tasked with caring for the 3,000+ student body. 

Cody experienced many similar issues when seeking support out on Long Island. After being hospitalized at an inpatient mental healthcare facility for the first time at just three years old, Cody received his first psychiatric diagnosis, and was put on a medication regimen by the next year. By nine years old, he had been held for psychiatric emergency services 12 times. His mother searched tirelessly but was unable to find outpatient services that both met his needs and had an opening to accommodate him. 

“I sat on waitlist after waitlist. While on waitlist for services, I had my first suicide attempt,” Cody shared. “I truly believe if I had the services I needed – that were deemed medically necessary for me – I wouldn’t have had the attempts.” 

After two years in a residential treatment center at 12 years old, Cody was discharged to home and community-based services. Although the residential treatment was helpful, he highlighted the need for continued, effective mental health care when he returned home. “The truth is that these hospitalizations don’t teach me how to cope or use skills and techniques when I’m at home,” Cody said. “This is why it’s so important for youth like me to have proper care and community support. And by me being in an inpatient bed due to lack of in-home and community services, I’m taking away a hospital bed from a youth who so desperately waits on a list. How is this fair?” 

Anya and Cody’s experiences highlight several issues that the Healthy Minds, Healthy Kids Council has been attuned to. The campaign’s recent Unmet Needs Study engaged Health Management Associates (HMA) to execute an in-depth needs assessment for New York children covered by Medicaid and Child Health Plus. The most egregious finding? 3 in 4 New York State children who need behavioral health care are not receiving critical services.  

Furthermore, consistently low reimbursement rates have resulted in massive staff turnover and vacancies, widespread provider shortages, and miles-long waitlists for children and families. The study indicates that addressing these shortages will require an additional 6,281 providers. Most of these staff (3,419) will be needed at outpatient mental health clinics—more than the number required at children & family treatment and support services (1,488), children’s home- and community-based services (1,101), and outpatient substance use disorder clinics (273) combined.  

Despite all the challenges within the youth behavioral healthcare system communicated to Speakout attendees, there was moving positivity shared for the future. Cody says that he is feeling much better these days and finally getting the care he needs for his mental health. He is even pursuing a future career in human services, to provide young people with the care he should have received himself. Anya reports that she’s doing well lately, too, especially thanks to support from her mother, who has “always fought for [her]”. These stories keep the advocacy grounded and remind us that pushing for greater access will result in more just like them for the thousands of youth across NY in need of support.  

Anya left off with an ask for all those who work alongside and inside the youth behavioral health system: “We as youth and young adults are drowning, and the fix is quite simple: invest in our mental health, invest in youth and family peer advocates, pay the providers what they deserve, and invest in our futures like lives depend on it. Because some days, mine does– and I deserve better. We all deserve better.” 

To view the HMHK Unmet Needs Study, find the full interactive map here. 

To learn more about CCC and how you can advocate with us, visit CCC’s website. 

Watch the full recording of the HMHK Speakout below!