Rutgers begins support program for legally blind

Since Oct. 1, calls have been coming in to a Rutgers-based peer support helpline for the legally blind, the first of its kind in the nation. 

The program, called Eye2Eye, provides support for people and families who are having difficulties with emotional adjustment to vision loss, said Steve Silverstein, the program's co-director.

“A peer helpline provides phone-based information and support for a specific population, and the people receiving the calls are from the same population, and so have lived experience with the issues that callers are calling in about,” he said. “The Eye2Eye staff members are all people who are either blind or who have lost most of their vision and who have gone through the phases of adjusting to losing their vision.”

The program, said a recent press release, is funded by a grant from the Lavelle Fund for the Blind which serves the Tri-State area. Rutgers has more than 20 years of experience setting up peer helplines, Silverstein said. The Reciprocal Peer Support (RPS) model was developed by Cherie Castellano, an Eye2Eye co-director.

All of the Eye2Eye peer counselors have gone through the challenges of vision loss and have adjusted to a new lifestyle, Silverstein said. They also have a history of providing support to others who are blind, whether through participating in support groups or teaching others how to use assistive technology. 

The peer counselors are not the only ones who have experienced vision loss first-hand, Silverstein said. One of the program supervisors, he said, is a blind doctoral-level psychologist who provides individual psychotherapy for those struggling with vision loss at the University Behavior Health Center (UBHC) Clinic in Edison, New Jersey.

At the state level, agencies like the New Jersey Commission for the Blind and Visually Impaired (NJCBVI) provide support groups, vocational rehabilitation, orientation and mobility training, he said. But there are few options for one-to-one counseling.

“We only know of one therapist in the entire state of New Jersey who specializes in working with people with vision loss, and so there was really a shortage of psychological services available for this population. While what we are offering is a range of emotional and informational support services and not individual psychotherapy, we believe this will still be very helpful to callers,” he said.

The helpline, which is run through Rutgers UBHC, addresses a need for psychological resources for the legally blind in New Jersey, Silverstein said.

“Eye2Eye was established, to provide emotional support, referrals and information for people who are blind or who are losing their vision, and who wish to speak with someone else who has gone through the process of adjusting to losing vision," he said.

That process can be an overwhelming challenge that sometimes leads to depression and anxiety, Silverstein said. The program hopes to help individuals who are having difficulties recovering their self-esteem and quality of life.

“It's important to understand that most people who are blind are not depressed," Silverstein said. “However, it's also true that in the early stages of adjusting to vision loss, depression and anxiety rates are very high, and even 2 to 3 years after living with vision loss, about 25% of people continue to struggle with significant mood and anxiety issues even when they have successfully learned many life skills.”

When people call the helpline, the Eye2Eye team collects medical history and information about their emotional and social adjustments to vision loss. Those questions and others are meant to get a complete sense of each caller and their needs in order to connect with them and provide assistance, Silverstein said.

A cornerstone of the Eye2Eye mission is resilience training, he said.

“Our goal is not simply to help people feel less depressed and anxious, but also to help them feel like they are thriving and leading meaningful and enjoyable lives,” he said. “As part of that, we coach people on how to develop skills to cope with stress and part of this includes a focus on their strengths and wellness like good nutrition, exercise, socialization and brain health.”