Fear of social stigma keeps many from seeking mental health care

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The National Institute of Health (NIH) estimates that only half of people in the United States with any diagnosed mental illness receive treatment.

We spoke to leaders from four local nonprofits in the Rochester region to find out why more people don’t receive treatment and how their organization is helping address this gap via presence, programming, partnerships and more.

NAMI Rochester

“Stigma is really what stops people from seeking care,” says Donna Leigh-Estes, executive director and CEO of NAMI Rochester. “There is still a great deal of stigma associated with mental illness and unless we begin to talk about it openly we’re never going to make the strides that we need to make.”

At NAMI Rochester — which is an independent affiliate of NAMI (the National Alliance on Mental Illness) and NAMI/NYS — all staff, volunteers and facilitators have lived experience with mental illness as a peer and/or family member.

“We help people feel that they’re not alone and help them break down those barriers of stigma that are associated with mental illness,” Leigh-Estes said. “We help to advocate for them if necessary and certainly we deliver hope that there is hope for individuals and families that are dealing with mental illness.”

Among the many programs NAMI Rochester provides (all free of charge) are peer support, family support, a suicide bereavement support group, and an eight-week coping skills class. The organization is always looking for new community partnerships and volunteers, Leigh-Estes said, and will be starting a NAMI on Campus at two local high schools in the fall.

Villa of Hope

A nationwide shortage of psychiatrists and other mental health professionals, as well as poor funding and low insurance reimbursement rates, are other factors contributing to the gap in mental health care, according to Dr. Serina Tetenov, PhD, chief program officer at Villa of Hope.

“The main thing that we’re all struggling with, no matter which organization I’ve ever worked at, has been a shortage of mental health professionals and a lack of funding,” Tetenov said. “When it comes to mental health and clients struggling to receive professional care, historically there has not been a great deal of investment in mental health care, especially by public insurance programs.”

At Villa of Hope, Tetenov said the organization strives to take a solution-focused approach and maintain the professionals that they have by showing them they are valued and supported.

“In general, if we could increase the number of psychiatrists, mental health therapists, and advanced practice professionals we would see a big change,” she said, of the treatment gap.

Among the many programs Villa of Hope offers for youth, families, and adults, are residential and outpatient integrated behavioral health treatment, community-based services, case management, and mental health programs.

“Making life easier for clients is really the important piece to the puzzle in trying to address that gap and making sure that they are receiving the care that they need,” said Tetenov, who points to telehealth as one way that can be accomplished. “When we think about closing treatment gaps, improving access is major and telehealth is a big way to do that.”

Mental Health Association of Rochester

Affordability, stigma and uncertainty with how to access care are just some of the many reasons the gap in mental health diagnosis vs. care exists today, according to Valerie Way, president and CEO of the Mental Health Association (MHA) of Rochester.

For individuals seeking to improve their mental health, the organization provides free, non-clinical support, including creative wellness opportunities, workshops, a public speaker series, resource navigation and peer support.

“We provide services and support from staff who have had their own journeys of recovery or a family member who has had their own journey with recovery,” Way said. “We call this peer support and peer support has grown over the last couple of decades. It’s really utilizing personal experience to connect with people in different ways than clinicians.”

To help with the challenges of access, stigma, and affordability, the organization offers free, self-help drop-in support services seven days a week from 5-9 pm for people who are in crisis or need someone to talk to. No appointments or referrals are needed.

“We’re an ancillary to formal clinical treatment, not a replacement,” Way said. “However, sometimes people don’t have to be in treatment or therapy their entire lives, but they need ongoing support. And we can be that, that place of support.”

Compeer Rochester

“The treatment gap is huge, no matter how you spin it,” said Sara Passamonte, president and executive director of Compeer Rochester, who notes the NIH statistic doesn’t even include undiagnosed mental health issues. “I think part of the problem is an underestimation of people who are actually dealing with mental illness and how we define it.”

At Compeer Rochester the organization uses the power of human connection to help address the gap. This is done in many ways, including intentional friendship volunteer programs in which adult community volunteers are matched with adults in the community living with mental illness.

“People who are in any position to volunteer do get some of their own healing out of it too,” Passamonte said. “And we’re finding some great research that shows volunteerism is good for your lifespan, heart conditions, stress level and your own mental health.”

Volunteerism is also part of Compeer’s youth program, which pairs carefully screened adult volunteer mentors with children, teens, and young adults living with mental health challenges.

Additionally, Compeer offers support for veterans via their CompeerCORPS Program — a partnership with the Monroe County Veterans Service Agency, through the PFC Dwyer Initiative. The program provides opportunities for veterans to engage, network, and form friendships with other veterans.

“The pandemic brought a spotlight on mental health and a spotlight on ending loneliness,” Passamonte said. “And it doesn’t take much to be part of the solution.”

Caurie Putnam is a Rochester-area freelance writer.