Establishing Support Groups

Jennifer Ottowitz: Welcome to OIB-TAC’s monthly webinars, where our presenters share valuable information and helpful resources to support professionals working with older adults who are blind or vision impaired. Let’s check out this month’s webinar. 

Polly Abbott: Welcome to this webinar on establishing support groups. Support groups play an essential role in supporting the process of adjustment to vision loss. As each group is unique in what they offer and how they offer it to their group members, you can never have too many support groups for people to choose from. 

This webinar describes how to establish new support groups in your community. I will be speaking today from the perspective of a vision rehabilitation professional working at an agency serving people with vision loss. But many of the points we will cover today can also be applied by peer support group leaders and other types of professionals in the community who see a need to start a vision loss support group. 

During our talk about support groups, we will discuss a little bit about the different group structures and group cultures that exist. We'll talk about how to find and develop potential group leaders, how to find community locations to host groups, and also what support or training to offer to new and existing group leaders. 

Before starting a new group, take some time to make connections with any existing vision loss support groups and learn about their structure and culture. Every group has its own flavor. By getting to know the groups that already exist, you will more easily identify what you feel needs to exist in the new group. 

Try reflecting on your goals for starting a new group. Why do you think there should be a new group? See if you can pinpoint why the thought occurred to you in the first place. Usually there's an identified need or gap in support that you have noticed. It could be something as simple as noticing that there is an underserved geographic area, but it could also be that you are seeing a specific demographic of your client base that could benefit from a group. 

For example, you may have ten clients who all have the same eye condition or ten clients who are very new to vision loss, and you want to bring them together. You may find, after getting to know the existing groups, that they are purely social in nature, and you see a need to offer a group with more educational content. 

There's many things a professional might notice that would spark a desire to create a new support group. The beauty of support groups is that you can never have too many. They all have their own flavor, you could say, which enables individuals to find a group that fits their taste. It's great if people have options to visit other groups in the area because they get to meet new people and develop new relationships. 

And as for the group leaders, if they have vision loss themselves, they can escape the pressure of leadership and gain some benefits by attending a group as a member and not as a leader. I do also know group leaders who have vision loss who attend other groups to see what they like and steal some ideas, which is totally fine, too. 

And consider, too, the privacy benefits of virtually attending a group hosted perhaps in a different state if you are a professional in the vision rehab field who is experiencing a change in vision. You know, just because you are leading a group or a professional in the field doesn't mean that sometimes you might not want to get some support for yourself. 

So, before you pick a location and start printing up flyers for your new support group, take some time to investigate what is already out there. In terms of group structure, I'm talking about how frequently it meets, where it meets, and who leads it, and the meeting format. Group meeting structure can influence who shows up and what happens at each meeting. 

For example, if the group only meets for one hour, there may not be time to provide social interaction and discussion, as well as host a speaker that's providing educational content. Therefore, a leader who intends for people to have time to connect and get to know each other may intentionally schedule longer meetings to ensure that this has time to happen. 

Likewise, a group formed to help working age adults may be virtual and limited to 45 minutes over a typical lunch hour to ensure the highest attendance. When starting a new support group, consider the plans for the group's longevity. The typical vision loss support group, I would say, is meant to last for years. 

You know, the goal at the outset is to create an ongoing, well-established group that occupy a dependable and welcoming corner in the local blindness community. However, when attempting to establish a new group, sometimes the best route to achieving this goal is to start with something shorter and time-limited. 

Consider offering a series of three to six support group-like meetings. Then, at the end of the series, give the attendees the choice of continuing on an ongoing basis. Usually, by that time, the individuals will have become familiar with each other, they'll be comfortable going to that location, and they may wish to keep on meeting. 

The location of the meetings will also have an impact on how many show up, and the demographics of your participants. In-person groups provide the opportunity for people to get out and socialize, which is important when so many people with vision impairment, especially older adults, tend to face more isolation. 

On the other hand, if certain months of the year are too hot, too cold, too snowy, then participation may become a challenge. Experimenting with hybrid models with hosting groups virtually during certain months of the year can increase participation. Whatever works best for the group is the best way to deal with this. 

Groups that meet at the agency or are at a community location can also impact who shows up. So, for example, if you decide to host it at the local agency for people with vision loss, some people may hesitate at entering a building with the words services for the blind over the door.  

They may consider it a place where they don't belong yet. On the other hand, that same person may feel very comfortable going to their local library to attend what in their mind are informational meetings about living successfully with vision loss. Leaders also bring their backgrounds to the table and can set the tone for the group. 

Vision rehabilitation professionals come with the knowledge of what skills and adaptations are most helpful and can encourage group members to try new things and receive services. Theirs is a very practical approach to adjustment with vision loss. Peer-led groups have a role model that can inspire change and growth and can share really the wealth of lived experience that they have. 

Non-vision professionals in community groups, I would say, are very common. They typically do not come with knowledge of blindness skills but are frequently passionate about helping their group members and will often be very effective group leaders and discussion facilitators. They often have a different skill set. 

These are typically social workers, local librarians, senior center activity directors, and other people who work in or adjacent to services for older adults. 

Group culture is to be found in the meetings themselves. Although culture develops over time, it may be helpful to consider these elements in order to set the initial direction. You can always experiment with these over time and see what members respond to most favorably. So, some things I've seen, you'll find groups that have different degrees of formality in terms of how they structure and run the meeting agenda. 

Some follow the same pattern every time and keep to a strict time limit, and others sort of ease into things and have a more free-flowing style of meeting. Some groups prefer a more educational focus and really insist that people are there to learn. And others are developed simply to engage in social or recreational outings. 

Other groups have a mixture of both. For example, many groups will have speakers for most of the year but plan for holiday parties. You'll notice groups where they prefer listening to a presenter rather than talking about feelings. Many groups choose to include family members and friends in the meetings, and others restrict it to members only. 

It's also not uncommon to have family members and friends having their own support group at the same time as the rest of them, but in a different room. And I think this is because so often the regular group members who have a vision impairment depend on their family and friends for transportation. 

Another element of group culture is the expectation for independence of the group members while they're at the meeting. For example, will there be sighted volunteers present that are assisting them to find a chair, serve the refreshments, etc.? Or will members, once they're oriented to the space, be expected to do this on their own unless they make a request for assistance? 

And lastly, does the leader always choose the meeting content, or is it a more collaborative and consensus-seeking process? 

Plan for the relationship. Whether you are dealing with a pre-existing group or starting a new one, take some time to consider that the relationship that the group will have with the agency and its staff as most likely you're entering into a long-term arrangement and each side, if there are two sides will have or will develop certain expectations of the other. 

The first question to ask yourself is, what will be the group's level of autonomy vis-à-vis the state or local blindness rehabilitation agency? Will it be completely independent, sponsored by, or completely agency-run and supported with the staff providing all the snacks, room, transportation referrals, all of that kind of thing? 

Or if it is sponsored by, what does it mean in terms of the time and resources of the agency staff that would go towards supporting the success of that group? And if the group is going to be autonomous, keep in mind that not all support groups wish to have the blindness agency involved. Some are perfectly happy just doing what they do in their own way, and that's fine. 

If you are going to be providing some support, material, or otherwise, define what the group can expect from the blindness agency. You know, a new group may need and receive a great deal of support from the agency staff in the beginning and then transition to a more autonomous leadership. Or it may, as within agency-run groups, become really an integral part of the programming with significant time and resources devoted to its upkeep, even with help from volunteers, I would say. 

If you, as agency staff, expect to be able to reduce your support to the group over time, be sure to have this conversation with the group leader often and in the early days of the group and give all the support and training, and encouragement that the new group leader needs so that they can feel confident and prepared to lead on their own some day.  

I think we know that consumers benefit from a close and or consistent, at least, relationship between the support group and the local vision rehabilitation services. Support groups give the agency an extra something that they can offer their clients who need support and exposure to the blindness community to help with that adjustment process. 

This helps them be more receptive to the new skills that the vision rehab professionals have to offer them. Likewise, support groups benefit from the professional knowledge that the agency can provide their group members. It's often not enough just to go to a group and talk about your frustrations and problems. 

The group is there to help you take that next step and actually sign up to receive those vision rehabilitation services that are there for you. Finding a group leader. Leading a group takes so much more time and energy than you would expect. You don't just show up and facilitate the discussion. 

There's hours of behind-the-scenes planning. So, how do you find or create a support group leader who is ready and willing to take on this challenge? 

Where to find group leaders. If you are looking for peer leaders, seek out consumers who have time, interest, and potential. You might see all the ideal qualities in one individual, or you might find a good combination. For example, if you know a person with really good computer skills and another who is a people person, you might have found a duo who together can share the leadership role. 

Most people with an interest in leading a support group come with some skills that lend themselves to either planning or facilitation. Professionals or staff who already provide programming in community locations are also potential leaders. The advantage here is that they will already have access to a meeting location and possibly other resources at their disposal. 

Organizing groups or providing presentations may already be part of their regular job duties, and these are librarians, senior center, community center staff, and sometimes medical or faith-based locations that have this sort of potential leader.  

And lastly, we have blindness agency staff with group facilitation skills. As I mentioned before, groups that are started by agency staff don't always have to stay that way. It can be a plan from the outset to only stay involved until there is a peer-group leader who feels ready to take over. 

To find out if the person you have spotted may be a potential leader, first consider what you have observed about them. Are they organized and able to keep a calendar? And are they unlikely to miss appointments? Are they a planner, would you say? What is their attitude about vision loss? Will they communicate positively about it to people who come to the group, especially those who are new to vision loss? 

Do they communicate responsibly and clearly? A good group leader will call people back and be able to explain things clearly. Are they comfortable with speaking in front of a group and dealing with all kinds of personalities? The person you're thinking of might have had a profession prior to their vision loss that gave them this skill set. 

And are they persistent? I think this quality is particularly important because when you are running a support group, there's many challenges that come up, such as finding a speaker or the constant task of managing many small details and moving parts that go into group meetings. And so, a person needs to be a little bit persistent to make sure that these jobs get done.  

And are they curious? As a leader, members will look to them as a dependable source of new information. So, someone that you see as a lifelong learner will often make a good leader or co-leader. And lastly, how much of a priority do you think group leadership will be for them? Leading a support group takes time, and I would say be cautious in offering leadership if it seems the person has many demands on their time already. 

The desire to lead a group can sometimes mask the realities of the availability of the time that person has. And it is really quite the commitment, and in this situation, if you have someone who really wants to be a group leader but, you know, is a very busy person, this is where the strategy of establishing a small group that shares leadership can be particularly effective. 

And lastly, of course, ask. Ask the potential leader if they're interested and explore through conversation if they would like to be involved in a support group and to what degree. It's important to note that you may have spotted the potential to be a group leader in them when, on their own, they might never feel the confidence or ability. Sometimes, all a person needs is someone else's vote of confidence, and then they'll rise to the occasion. 

We will come back to more on what sort of training is helpful to new support group leaders. For now, let's talk about how to find a location to host your support group. 

There are many locations that can make a good meeting room. First, you want to look for community locations that are already frequented by potential group members. You're looking for the target demographic of your intended group. So, these are both a source of group members, but also a location that people can get to and are, more importantly, comfortable in. 

This removes some barriers to attending the group. Transportation options such as being on a bus route or even having a safe pedestrian path from the sidewalk to the front door are good points to look for. Older adults, I would say, are often getting rides, but not always. Privacy and quiet is also important. 

People need to be able to hear each other and feel they can share personal details with only the other group members. So, if you're at a community location and they're trying to give you a corner of a larger room and there's ping pong going on the other side, that is something that you'll probably want to say no thank you to. 

Does the location have accessible restrooms and elevators? Are there good acoustics and is there a microphone available? A too-large room or an echoey room may not be conducive to groups looking for heart-to-heart conversations, but they might be good for groups who prefer to listen to speakers, as long as there is a microphone. 

Some older groups are very hard of hearing, and just having a microphone can make speaking and listening easier for everyone, even in smaller group settings. Does the location have flexible seating arrangements? These are a plus if you have plans to offer different kinds of programming. For example, auditorium-style seating will focus attention on a speaker. 

And arranging the chairs in a circle will promote more group discussion and sharing, and it's nice to be in a place where you can mix things up and change them around as needed. And free. Free is always good. Sometimes free is available, though, under certain circumstances. For example, to get access to the community room, you have to be a resident of that particular community. 

So even if they tell you there's a charge, read the fine print and see if there are ways to get that space for free. Some other considerations for community locations are when is the location open and do the hours that it is open match with the needs of the group members. For example, older adults may have opinions about finding their way through the library on Saturday mornings if there are crowds of small, loud children visiting for story time. 

Or adults who depend on family for transportation may not be able to attend unless it's during typical after work or evening hours. Look carefully at the calendar of events that is with that community location and see if there's anything else that might be competing with attendance. For example, if you want to hold your support group at the same time as the monthly bingo, that could be something that affects your attendance at your meetings. 

Find out, too, if there will be one person on site who can be a liaison to the support group. The group leader is going to need a go-to person if the room is too hot or too cold or not set up or if there's other issues. 

Strategizing for an opportunity. It helps to be a bit opportunistic if you are on the hunt for a community location. Here's a little case study about how John found a location. John, a low vision therapist, traveled to a remote part of the state to see one client. Having time before the appointment, he decided to visit the local community center. 

There was a poster for the fall health fair. He arranged to be a vendor and offered to do a short presentation on seeing better doing daily tasks while promoting his agency's low vision services. While interacting with the audience, it was clear that many were having serious vision issues.  

John has spotted his opportunity. What are some next steps he could take? What happens next really depends on a few things in terms of what he discovers about that particular community location. He could take some time and learn about the different staff roles at the center. For example, activity directors, wellness coordinators, and on-site social workers are some examples of titles that he might try to connect with.  

He's really looking for someone who works directly with the people who come to that location and who will likely already be aware of individuals who have trouble seeing. He's also looking for people who have roles that may make them lead other groups as part of that job. And if he notices on the activity schedule that the center or community location does, in fact, host other kinds of support groups, it's really a good lead in terms of them possibly considering adding on a vision loss support group. 

And also, he could investigate if the center provides meeting space to community members. If the site will host, but not staff, a support group, he could find out under what conditions they would loan space for such a group and then try to find a peer leader to lead that group in that particular location. 

Expect to find all levels of collaboration with community partners. They may donate space but nothing else. They might host the group but restrict involvement to marketing, providing refreshments, etc. They might facilitate but expect the agency to provide meeting content, find presenters, and make all referrals to the group. 

And best case scenario, they, you might find a community partner who takes on the group as an extension of their programming, although they may look to you for different degrees of support. Relationships do come in all shapes and sizes, and it may change depending on who your contact is and their level of interest in what you're doing. 

Sometimes, the level of engagement can change quite drastically with staff turnover. It's best to be flexible with your own expectations and be open to different levels of partnerships. 

Training for support group leaders. Support group leaders, as we have seen, can come from a variety of backgrounds, and therefore, their training needs will be different. A leader who has lived with low vision may not, for example, understand much about living with total blindness. A social worker may have great group facilitation skills but be completely new to the resources most commonly needed by people who are living with vision impairment. 

However, coming from the perspective of a vision rehab professional, there are some basics that could be helpful to plan as part of training sessions to help everyone really get on the same page. Likewise, you can also draw from the expertise of people like the social worker or the person who has lived with low vision, who have those complementary skill sets and knowledge base. 

So, here are some suggestions for training topic basics that you might want to offer. For example, it's good if everybody knows how to refer to local services and what the local resources are for people with vision impairment. You can offer human guide training. You can provide training on how to recognize signs that a group member might be in a certain stage of adjustment and teach them how to respond appropriately. 

I think every support group leader should have some familiarity with common adaptations such as lighting, contrast, tactile solutions for people with vision loss. And everybody benefits from either a new introduction or a refresher just on the nuts and bolts of how to plan and conduct effective group meetings. 

One of the most practical supports that can be offered to new support group leaders is assistance in developing a structure for long-range planning. Here is one option that I've developed using an Excel document. First of all, though, why do I think this is so important? Well, disorganized leaders can become overwhelmed and stressed out. 

This, in turn, results in disorganized, badly run meetings, which affect the experience of the group members. Whereas organized group leaders tend to be calm and confident, which sets the tone for a pleasant meeting experience. Documentation of long-range planning also provides a bird's eye view of the meeting topics. 

You can plan more easily to offer a balance of topics without undue repetition, as well as bring back something worthy from the past. Documentation allows a new leader to step in easily if the current leader needs a break or has to leave suddenly. I've seen a lot of leaders who are carrying everything in their head or have notes in several places and nobody knows where. 

So, if the leader becomes incapacitated suddenly, everything is lost. Having documentation and planning in one location and then sharing it with others ensures continuity for the group. Another benefit of planning is the ability to see which tasks can be delegated and shared with advance notice. This is important because it shows that the leader respects everyone's time and energy. 

I have a simple Excel document on screen as a sample planning document. We have included this file on the webinar webpage if you'd like to have your own copy. In this example, on row one, we have the agenda items in column A and all the months January to December starting in column B. All of the agenda components are listed one per row in column A. 

They are discussion topic, speaker, speaker contact, info, resources to share, snack, and additional notes. In this example, we can see that the leader has already decided that June will not have a meeting by recording it on the row for discussion topic. On the row for additional notes, also in the column for June, the leader has left themselves a reminder to do an annual satisfaction survey. 

Other events, such as White Cane Day in October and the holiday party for December, are already on the schedule to help the leader think of and plan related snacks, speakers, or discussions. 

Keeping track of attendance is also a task worth giving attention to, as it can impact monthly planning and follow up with individual members. Here, I have a view of a sample attendance sheet in Excel. This is also available on the webinar page. The participant names are added to column A and row one has the months of the year heading each column.  

To check attendance, number one is added to the cell in the month a particular attendee shows up. The sheet will automatically tally how many times they attended in a year and give a total for the number of participants at each monthly meeting. This example shows three attendees listed in column A. They are John Smith, Joe Schmo, and Jane Doe. 

We can see that John Smith avoided the summer months but attended in the fall and winter. Joe Schmo attends every month, and Jane Doe only attended in the spring and summer, and then probably didn't want to miss out on the holiday party, so she attended in December all of a sudden. The data collected on a yearly attendance sheet can be used in many ways. 

You can identify regular members who may be potential future group leaders. You'll know the months with high attendance that may indicate popular topics, speakers, or events that are worth repeating or simply good times of year that people are able to show up. You'll notice individuals like John Smith who suddenly stop coming and who may benefit from a friendly phone call to see if they're okay and encourage them to come back. 

Trends that you notice over time can cause you to make a change in the group format. For example, if after two years you realize that no one attends during hot summer months, you might choose to make those months virtual meetings. Over the long term, an attendance sheet will allow you to track the growth of your group and any impact from marketing efforts. 

And someday, the group will be able to look back and celebrate its 10th-year anniversary or more. Documentation on the group members and its activities will create institutional knowledge, so to speak, that creates a sense of shared history and belonging that can be passed on when the original group leader and founding members have moved on. 

Based on my past experience working with a variety of different support group leaders, here are some training topics that you may find yourself providing on an ongoing basis to them. Planning support groups each month is like trying to plan what's for dinner every night. So, just be prepared that support group leaders will always be reaching out for ideas around what to do at their next meeting and what community resources are new that they can share. 

It's always helpful to review blindness basics knowledge. It's great if you can provide any kind of training around group facilitation skills. And lastly, they may need assistance finding volunteers, transportation, getting access to meeting space, or finding sources of funding for refreshments. These are not the only items that they might need help around, but I would say these are, are the common ones. 

Finding group members. Once you have a group leader and a location, it's time to advertise and let people know about the group. When starting the initial promotion for the group, consider giving it a short, positive, somewhat catchy name like “The Eye-Can-Do Group.” We all have met people who are triggered by the words support group. 

To them, the term may convey the idea of people sitting in a circle expressing deep emotions to each other, and this is not attractive to them. The word support group may have to be used at some point in your advertising, but there are certainly other words to describe a group if this is a concern. 

Design a simple large print flyer. The more accessible the font, the more likely, someone who already has a vision impairment will be able to read it and call without needing assistance. Lastly, make a list of all potential referral sources to contact. Work your way down the list, contacting anyone and everyone who might be willing to send referrals or help you promote the existence of your group and attract people to it. 

Regular marketing and promotion of the group will help it become well-established. So, promote with flyers, emails, and word of mouth. Promote in person at health fairs and drop into places with a stack of flyers. Promote on a schedule. Don't give up. Please note that if you are starting up a new group, it can take six months to a year to have that group become well-established with regular attendees. 

So, if you're supporting a new group leader, please be encouraging and then double down on promotional efforts. Try to tantalize and attract new members by pointing out what they will learn or experience if they give the group a try. Some of your best promoters can be current members. And also, look in your community and find the doctor's offices, libraries, home health care, places, opticians, faith-based organizations, hospitals, retirement communities, any place that has the demographic of the people you are trying to attract. And definitely on your list of local resources should be the local consumer groups for the American Council of the Blind and the National Federation of the Blind, and also look for Centers for Independent Living or CILs. 

If there's another vision loss support group already in the area, try to help each other cross-promote and be on friendly terms. There truly is space for everyone. 

Establishing a support group is rewarding, particularly for peer group leaders. Starting and leading a group is a practical application of the many skills learned during vision rehabilitation training, coupled with the satisfaction of helping others. Support groups play a vital role in helping consumers adjust to vision loss in addition to vision rehabilitation services from the local agency. 

And finally, vision support groups support the ongoing task of raising community awareness of the existence of services and support for individuals experiencing vision loss.  

Thank you for listening. I hope the ideas presented in this webinar have helped you to plan your course of action as you set out to create more opportunities for support in your home communities. 

Funding statement: The Older Individuals who are Blind Technical Assistance Center (OIB-TAC) is a development of the National Research & Training Center on Blindness and Low Vision (NRTC) at Mississippi State University, focused on agencies serving older individuals who are blind. This grant, H177Z200001, is funded by the Rehabilitation Services Administration (RSA) under the U.S. Department of Education.  

Contact us: To contact the presenter, Jennifer Ottowitz, email jottowitz@colled.msstate.edu. For more information about OIB-TAC, please visit our website, www.oib-tac.org. Also, visit our other NRTC websites, www.blind.msstate.edu and www.ntac.blind.msstate.edu. Visit NRTC on Facebook at www.facebook.com/theNRTC and on X/Twitter at www.twitter.com/MSU_NRTC. Our mailing address is P.O. Box 6189, 205 Morgan Avenue, Mississippi State, MS 39762. Our phone number is 662.352.2001. 

Jennifer Ottowitz: This has been OIB-TAC’s monthly webinar. Thanks for tuning in. Find recordings of our past webinars on our YouTube channel, and discover all of our many resources at O I B hyphen T A C dot O R G. That’s OIB-TAC.org. Like us on social media and share our resources with your colleagues and friends. Until next time.