Starting and Finding Support Groups for People with Vision Loss

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Support groups can be pivotal to adjusting to vision loss. But what should you do if there are not any in your region? Have you ever thought of starting a support group for people who are blind or low vision in your community? Whether you are a professional who works with people affected by vision changes, someone who is blind or low vision, or you have a loved one who is, starting and facilitating a group can be a significant and rewarding experience. It takes some planning and steps to start, but if you have a heart for it, you can do it!

Preparing Yourself to Start a Support Group

Before starting a group, you may want to study to prepare yourself to facilitate a support group. I recommend reading and taking a few online courses to understand eye conditions resulting in vision changes and adjusting to the low vision and blindness process. You may encounter people in all stages and phases of losing vision and adjusting to it. You will benefit from having a broad knowledge base and going beyond your own experience.

Here are some suggestions:

Read about eye conditions, support groups, low vision, the adjustment process, and many other topics here on VisionAware. It is a great place to start, and you can refer others to helpful information as needed.
Read “Self-Esteem and Adjusting to Blindness” by Dean Tuttle and Naomi Tuttle DB66055. This manual offers an overview of blindness and its meaning for the individual. It describes the adjustment process and psychological implications of living with vision loss.

Read “When You Can’t Believe Your Eyes: Vision Loss and Personal Recovery,” by Hannah Fairbairn DBC11619. (Book Review of “When You Can’t Believe Your Eyes” – VisionAware) This is an up-to-date practical guide on personal and social recovery for adults with vision changes and includes many great resources.
Visit the OIB-TAC Continuing Education offerings to discover many relevant courses available to professionals, consumers, and the public. You will find information and resources to help you be more informed as you work with others.

You will want to explore what resources are available locally and learn how they can be accessed by the blind and low vision community. Though there is not one universal experience of losing vision, there are commonalities that can bring people together in a support group. Don’t worry about becoming an expert in all things blindness related! You will learn what you need to help others as you go.

What Will This Group Look Like?

Next, you will want to consider what kind of group and type of structure it will have. Consider these questions:

Do I want to partner with a local vision agency or eyecare specialist? Or
Do I want this group to be a “peer-led” support group?
What will be the focus of the group? Education, Social Activity, Emotional Support, or a combination?
Will it be open to participants of all ages and eye conditions? Or

Will it be for a special age group or perhaps for people with one particular eye disease?
Will the group meet virtually, via a free conference line, or in-person?
Will the group meet in specific weeks or be ongoing?

Getting the Word Out

When I started my support group 8 years ago, there were no resources or services for people with vision changes in my area. I was struggling with my vision changes, trying to learn independently, and decided to start a support group. I put some flyers around town at the library, eye doctor offices, senior centers, and community bulletin boards at the grocery store and placed an announcement in our local newspaper and magazine. There are even local Facebook groups and the Nextdoor app where you can advertise a meeting. I held a first meeting to get a pulse on the interest for such a group, and to my surprise, about six people attended that meeting. So, you need to “shake the bushes” and see who is out there!

We spent the first meeting voting on a name, defining our purpose as a group, and deciding together on the day, time, location, and frequency of our meetings. I surveyed the small, brave group about what they wanted and needed. We started a members’ directory and planned our next meeting. It was wonderful to meet others living with blindness or low vision, like discovering a new planet where we all spoke the same language!

The Nuts and Bolts of Facilitating a Support Group

It is important to establish a few “ground rules” for participation in the group to create a safe and enjoyable environment. The group can set these rules together and agree on them. For example:

Be respectful and courteous of all members.
Speak without judgment or offensive language.
Listen without interrupting the speaker. Don’t monopolize the conversation.
Avoid hot topics like religion and politics, and stay on topic.
Members will maintain the confidentiality of others. What happens in the group stays in the group.

Involving other group members in the meeting may be helpful, which will encourage greater investment, ownership, and participation. You may even invite someone to be a co-facilitator with you. Volunteer roles can include:

Call members to remind them of meetings and events.
Greet new members and guests. Give them a “welcome packet.”
Bring and serve refreshments.
Maintain the members’ directory and a Resource Guide.
Set up and clean up the meeting space.
Plan special events and social outings.
Social media, flyers, and other advertising tasks.

Planning Meetings

You will want to plan your meetings and establish a routine of beginning and ending on time. Having an agenda helps people know what to expect and respects their time. Consider developing a calendar with each meeting planned for the year.

Maybe you will start with an ice-breaker activity or a check-in time. Then there may be announcements or business to discuss. The main portion of the meeting may be a guest speaker, a discussion on a topic, or a demonstration of a product for low vision. Maybe you want to try using role-playing to help members practice new skills. Some people use audio lessons or videos in their meetings. Or perhaps ask a group member to share their personal story. Some groups may elect to read a relevant book together and then discuss it at the meeting. And some groups plan social outings (eating at a restaurant), work on special projects (hosting a table at a health fair), or do volunteer work together. From my experience, I suggest building in time for free conversation and relationship building before or after the meeting. The possibilities are endless, and your group will develop their ideas to fit their needs and style. The support group will take on its personality and momentum toward becoming a helpful community. There is no “right” way to organize a group as long as it is safe, supportive, and respectful of all participants.

The Facilitator’s Role: Creating the Right Atmosphere

The facilitator of a support group is responsible for ensuring a welcoming and non-judgmental atmosphere in the meeting and encouraging sharing and participation. They act as gatekeepers to start the meeting on time and maintain the flow of conversation so everyone can speak and be heard. (Some group members may choose not to speak, which is okay.) A facilitator will remind members of the importance of confidentiality and other rules. It is best to deal with issues immediately. The group process can become difficult at times, and problems will arise, such as:

Disruptive group members
Meetings become negative gripe sessions.
Confidentiality is broken.
Group tension or interpersonal conflicts
Inappropriate or unsound medical advice is given.

The Ideal Support Group Facilitator

Remember that as a facilitator, you do not have to be an expert or have all the answers. Nor do you have to act as a therapist or counselor. Sometimes, it is appropriate to refer members to outside services and resources. Linda Pogue, MSW, Peer Support Training Advocate, has trained peer supporters for many years. She says an ideal Peer Support Group Facilitator will:

Have a purpose and a goal.
Assist others in building their own independent lives.
Work as a collaborator rather than an overseer.
Run on empathy, not sympathy.
Build Circles of Support around consumers.
Build bridges to people and resources within the community.
Involve friends and family.
Help people help themselves.
Keep all information about their peer group members confidential.

Additional Tips for Facilitators

Transportation to meetings may be a problem for some members. Explore local options with the group and suggest carpooling as well. Contact a local Lions Club to request volunteer drivers.
Give an orientation of the meeting space. Include where the nearest exits are and how to find the bathrooms. Set the room up for the best lighting and acoustics, if possible. Chairs placed in a circle promote a positive group dynamic.
Be mindful of each member’s ability to walk, hear, and other physical limitations you will want to accommodate.

Support for the Support Group Leader

You will find great resources on the Second Sense website for starting and leading a support group, including a leader’s manual, tip sheets, and topic ideas. There is another helpful Support Group Manual on the OIB-TAC website. With some preparation and planning, you can organize a blindness/ low vision support group to help others cope with vision changes, find the resources they need, and build friendships and connections in the community. And I dare say, you will enjoy many benefits yourself!

Find an Existing Support Group

While starting your own group can be deeply rewarding, you don’t have to begin from scratch. Many established organizations and peer networks already provide excellent opportunities for connection, information-sharing, and encouragement. Exploring these resources can give you ideas for structuring your group, introduce you to potential partners, or even connect you with an existing community that meets your needs. Below are some support groups and resources available to people who are blind or low vision and their families.

The American Council of the Blind (ACB) lists helpful resources for people with blindness or low vision and their families. The website lists affiliates in each state and those for people with specific interests. Older people who are blind or have low vision may find information of interest through the ACB affiliate Alliance on Aging and Vision Loss (AAVL). Another special interest affiliate, the Council of Citizens with Low Vision International (CCLVI), focuses on individuals with low vision needs. Offerings include:

support,
resources,
advocacy,
education,
Zoom calls,
publications, and
scholarships.

Front Porch

Covia Well Connected and Well Connected Espanol (now under the name Front Porch and formerly known as Senior Center Without Walls) offers:

enrichment,
community,
fun,
support and
learning groups for older adults who may be homebound.

All groups meet virtually (offering telephone or online access). There is no cost to join or participate. They provide support groups specifically for people who are blind or low vision. Visit their website to check the catalog of offerings, or call 1-877-797-7299 to learn more or register.  

Eye2Eye

Eye2Eye is a free phone-based peer support program offering:

emotional support,
assessment,
information, and
referrals to people who are blind or visually impaired and their families.

The program helps people cope with the challenges of adjusting to vision changes, using trained peer support specialists who are also blind or low vision. Support is also available in Spanish. Contact:  (833) 932-3931 or email: [email protected].

ILVSG

ILVSG TeleSupport is a support group designed for older adults in the US with low vision who may not have access to the Internet or other in-person groups. The group meets monthly over the phone and has no fees or obligations. Learn more at MD Support — TeleSupport  or call  1-888-866-6148 to get started.

Family Caregiver Alliance

The Family Caregiver Alliance (FCA) offers national, state, and local programs to support and sustain caregivers. An online family support group is also available.

Hadley Institute

Hadley offers tuition-free distance education courses in various media on topics such as participating in or even initiating self-help groups and dealing with issues related to blindness or low vision. Call 800-323-4238 for help connecting to services, resources, and online discussion groups.

MATHER

Mather is a not-for-profit organization dedicated to creating Ways to Age Well. They offer a variety of virtual programming. Many programs are free but require registration. Examples of programs include

mindfulness and brain health,
movement and dance, and
chair yoga.

Foundation Fighting Blindness (FFB)

The Foundation Fighting Blindness has chapters nationwide providing education and connections to low vision resources.

The National Federation of the Blind Seniors Initiative is a learning peer support group. They reach out to seniors experiencing vision changes, empowering them to use their talents and abilities, learn effective strategies for living independently, and acquire a positive attitude about living with blindness or low vision. 

National Alliance on Mental Illness

The National Alliance on Mental Illness provides support groups and a telephone hotline. Call 800-950-6264 Monday through Friday, 10 a.m. to 10 p.m.

Senior Center Without Walls

Several organizations offer this type of programming throughout the country. For example: Senior Centers Without Walls | Neighborhood and Community Services (fairfaxcounty.gov) and Senior Center Without Walls | Sowega Council on Aging (sowegacoa.org).

Social Call is a Front Porch program connecting adults 60 and older to new friends on the phone or video calls. Volunteers are “matched” to participants to build friendships through weekly calls. This free service is a great way to socialize and connect when you can’t get out in your community. To get started, visit the Social Call website or call 1-877-797-7299. Front Porch also offers a home matching program in the California Bay area for individuals who want to share housing.

Vanderbilt Visually Empowered Individuals Support Group

Provided by VanderbiltHealth.com, this support group meets virtually on Microsoft Teams or by phone monthly from 6:30 to 8 p.m. Eastern. Anyone is welcome to join. Call (615) 322–5000, register online, or scan the QR code to sign up:

QR Code for Vanderbilthealth support group

Vision Exchange

Vision Exchange is an online resource for support group leaders facilitating support groups for adults with blindness or low vision. The purpose is to exchange ideas, information, and community resources to help adults with blindness or low vision remain independent.