2014-12-10-Self-Help Groups: Resources and Strategies
Seminars@Hadley
Self-Help Groups: Resources and Strategies
Presented by
Audrey Demmitt
Dan Roberts
Erica Weiss
Moderated by
Randy Morgan
Dawn Turco
December 10, 2014
Host
You’re listening to Seminars@Hadley. This seminar is “Self-Help Groups: Resources and Strategies,” presented by Audrey Demmitt, Dan Roberts and Erica Weiss; moderated by Randy Morgan and Dawn Turco.
Dawn Turco
Greetings and welcome to today’s Seminar@Hadley. I’m Dawn Turco and I am I guess we’ll call it co-moderating today’s seminar as I have somebody else with me today to work with our wonderful panel of presenters.
Today’s topic is called “Self-Help Groups: Resources and Strategies.” And as I said we have a slightly different format today, so I will be handing it over to Randy Morgan who is a part-time instructor with Hadley and teaches our self-help group courses.
But I also want to mention today’s seminar, for those who registered for continuing education, there is that opportunity. And I will encourage you to go ahead and go back to your registration information because there is directions on how to get to the quiz that’s necessary in order to earn continuing education hours for today’s seminar. And since the seminar will be placed in our Past Seminars room, and any accessing it for the recorded version I wanted to remind folks that they did get their directions on quiz taking in their registration information.
Okay, Randy, I’ve done what I need to do here to get us underway. I am handing the microphone over to you, and if you would get us started and introduce our panel that would be wonderful.
Randy Morgan
Okay. I’m a teacher at Hadley and I teach both courses on self-help groups. We’ve assembled a very impressive trio of experts in the field and each are going to discuss their respective programs, and tell you a little bit about themselves and be very broad. So we’re primarily focusing on, we might want to start a new group, ideas for creating effective, successful [students] and some of these strategies.
The topic of self-help groups can be very broad so we are primarily focusing on resources available to those who are leading groups or might want to start a new group. And we will touch on various strategies for creating successful, effective self-help groups that might be different and that many of you will find of interest.
I’m not going to take a lot of time introducing our guests as they will tell you about themselves as part of their presentation. Just briefly we have Erica Weiss who is a social worker, and she runs the New Perspectives support groups for Vision Forward in Wisconsin. And we have Audrey Demmitt, a nurse who runs a support group and who is the Support Group Advisor and a Peer Advisor for the American Foundation for the Blind, Vision Aware; and Dan Roberts, Founder and Director of MD Support and creator of the International Low-Vision Support Group Network. He’s also the Editor-in-Chief of “Living Well with Low Vision” at Prevent Blindness and Resource Consultant for MD Foundation.
So after each presenter we will have a time for questions before we move on to the next presenter. We will begin with Audrey Demmitt. So Audrey, I will release the microphone to you so let me know when you’re ready for questions from the audience.
Audrey Demmitt
Well good morning, everybody. This is Audrey Demmitt. I am coming to you from the Atlanta, Georgia, area. And it’s a bright, sunny, clear day today, so good stuff, huh?
I want to come to you today and speak to you about support groups from a peer perspective, and I’d like to share a little bit about my own journey into the support group arena. And then I will end with tips and resources to share with you.
So I have retinitis pigmentosa. I am a nurse that was actually working up until a year ago, and during the time when my vision started to really deteriorate I was having a very difficult time. I was very alone and isolated; I did not even know what I needed in the way of help of services.
But I landed on the doorstep of a support group which I found on my own, and it was an hour and a half away from my house which my husband and I decided we would give it a try. And it was one of the very best things that I could have done in this adjustment process and learning to live with vision loss.
There in that group I met many professionals who were blind, visually impaired, living full lives, engaged in their communities. They had hobbies and interests and I felt like my life was shrinking at the time, and I was very afraid of losing my job. And when I landed there and met these inspirational and motivational people I realized that there is life after vision loss. And true to my form I decided that boy, if I was going to be a blind person I was going to do it right and I was going to do it well.
So I gleaned from that group as much as I could about resources, devices, services; really dug in and made the most of that experience and came away really with the ability to sort of reframe the experience of vision loss. I think I realized that it wasn’t going to be the end of my life, it wasn’t the end of the world, and I began to reinvent myself in many ways – thinking more about the future and being hopeful and having courage to move on and move forward with accepting my vision loss, adapting to it and ultimately the adjustment process.
So I share all that with just the understanding that we all here probably already appreciate the power of support groups, but I’m particularly passionate about it and had such a wonderful experience myself. And along the way I was connected to the rehab services, the vocational rehab of my state, talking books and many other wonderful resources that made living with vision loss easier.
And in that process I was invited to go to a workshop on peer support groups and mentoring, and this was offered through an independent living center. And that was really the beginning of me starting to think about having a support group myself. And I decided that there were a few other things that I needed to do in order to prepare myself for that, and Hadley was one of those steps that I took.
The first course that I thought would be very helpful, not only for myself personally but also to understand the experience of vision loss from a broader perspective, was the Self-Esteem and Adjusting with Blindness course with Naomi Tuttle. And if you have not taken this course and you work in the field it really is a wonderful course. It really does give you a great foundation on the fundamentals of this experience and the adjustment process, the stages and phases.
And as many of you probably know, vision loss, that experience of vision loss is much like a grief process. And so when people land on the doorsteps of support groups, many of them are isolated, they’re afraid, they’re alone. In this day and age where there’s such a shortfall of funding in programs, many people are not getting services or not getting them in a timely manner. So support groups can really play an important role and an adjunct in helping people to cope with vision loss.
After benefitting from this support group I decided that in my own area, it was a very rural area south of Atlanta – there were no services for the visually impaired, there were no resources. I struggled along for several years thinking I was the only one in the whole world with a vision impairment and decided that I would start a support group. And to start to do that I mentioned that I took the self-esteem course; I took the peer support training that was offered through the independent living center.
I spoke to my optometrist who was in the community and he has low vision experience so he really understood where I was coming from, and we strategized together. He wrote an article for Low Vision Awareness Month and submitted it to the newspaper, introducing the launch of my support group.
And my support group is called Envision Support Group and it began with just three people. And I was really surprised that in my little town there were two other people with vision impairment. But before the year was over we actually had 21 members who were visually impaired plus their family members and caregivers, and I was just shocked – it was like people were coming out of the woodwork. And suddenly I wasn’t alone in that anymore, and these people didn’t have to be alone in it as well.
So it was really a wonderful thing. We meet at a senior living center once a month. Our meetings consist of topical discussions; we have guest speakers, we have demonstrations. We also have socials and times when we go out into the community, which I believe is really a great opportunity for the members to try out their new skills, to gain some confidence but also to build community awareness of the needs of the visually impaired.
So for instance if we go out to lunch at a restaurant I call ahead, I talk to the staff about what we’re going to need so that they’re not afraid of us and it just makes the meal go a lot smoother. So we do social events.
Another thing that I think is really helpful to bond a support group together is to work on projects collectively. Whether this is a letter writing campaign to local government, or a fundraiser, or any kind of project, a technology expo – these things where you have to sort of collaboratively come together and pull something off really bonds a group and people become more invested.
So I launched this group. We now have an average of 10 to 15 people that attend on a monthly basis, and I’m certainly in contact with most of the original people. And it has been a wonderful, wonderful experience to watch these other people sort of re-embrace life and reinvent themselves, get connected to resources – you know, move through the adjustment process themselves: moving from a depressed, isolated person to somebody who has hope for the future who are trying new skills and branching out and engaging in life again.
So this is the power of support groups and I’m a firm believer in it. And as a result of my retirement I began to look for other ways to participate in life, and I recently joined the Vision Aware team. And I’m happy to say I’m very proud of what Vision Aware does and I’m happy to be a part of that team. But I wanted to offer that to you just to give you more information about what Vision Aware has that can help support group leaders or people who might be thinking of starting a support group, or even someone who is thinking about joining a support group.
Under the heading of Emotional Support we have a section on support groups. There are several articles about support groups there. There’s many resources listed for people to begin a support group, find a support group. We have a directory; it’s a national directory and we are also looking for people to add their groups to that directory.
So if you’re interested in adding a group to the directory you can contact me at and I can help get your group into the directory. If you’re someone who is looking for a support group in your area you can also contact me at and I will be happy to respond with information for you.
You can also check out our Featured Support Group articles that we do every other month, and the intent with these articles was to sort of share ideas and formats and projects and the things that other support groups are doing that are working well, and honoring the people that are running these support groups because it is a big commitment. So if you’re interested in just reading about other support groups or reaching out to other support group leaders you can check out the articles that are posted.
Now, our directory of services, we do have a directory that’s specific to support groups nationally – but of course we have all other services as well. For instance there’s a vision rehabilitation agency. It might appear in the directory and one of the services they offer might be support groups, so just keep that in mind.
And our other speakers are going to be talking about some other resources and ideas, but they’re also found on Vision Aware. And it’s just a great site to visit. Now, as far as being a leader I use Vision Aware to gain my own information and knowledge on topics, relevant research, anything that applies to vision loss and living with vision loss to discuss with my groups. I point them to Vision Aware all the time, hoping that people will get on that site and glean the wonderful information that’s there.
We have everything from everyday living tips, research updates, newsletters, and message boards. And that’s another place where I think people can really benefit. If you’re leading a group or thinking of leading a group you can use the message board thread to consult with other leaders and ask questions, and I’ll be watching that message board and can give responses as well. But Vision Aware is just a wonderful resource for support group leaders because you can get all of these benefits that I’ve mentioned.
Now I want to go back a moment. Another thing that I did to prepare myself to launch my own group was I took the two courses that Hadley offers – the Self-Help Introduction and Advanced Topics. Randy Morgan is the instructor for that, and this is really invaluable. It really gave me the nuts and bolts, starting from the very point of what is your mission statement? What do you want your group to look like? How do you advertise? How do you go out and find a location? It was very, very practical information and a short course, so not anything that’s too overwhelming. And it helped me think through what I really wanted my group to look like.
And I decided I wanted it to empower, encourage, educate people. And my number one goal was to get people connected to services because that’s where I felt the most lost – where do you go for help?