How Can a Support Group Help in Adjusting to Visual Impairment?

When someone experiences vision loss, many questions arise. Among the most urgent is where to turn for the resources, expertise and assistance one needs.
One way to get information directly from others who “have been there, done that” is by attending a support group for people with vision loss. These groups, available in many communities, generally are open to new members.
Support groups vary a great deal but most offer discussions on the challenges of living with vision loss and many offer programs and presentations from vision rehabilitation professionals.
If you want more information about how support groups operate or how to locate a group in your area, please post a reply on this board or feel free to post your specific question on the Adjusting to Vision Loss forum: http://www.visionaware.org/forum/adjusting-to-visi...
and we will try to help. You will need to log in to post. Also, visit: http://www.visionaware.org/supportgroups
for more information.

There are currently 9 replies

Sort Replies Oldest to Newest


Re: How Can a Support Group Help in Adjusting to Visual Impairment?



To GCblau- Hi My name is Audrey and i am the Support Group Advisor for VisionAware. I am not an expert on this topic by any means but i could speak about my own experience working with accommodations and how that all came about. i can also ask around for a recommendation from our CareerConnect staff. Can you please email me at amdemmitt@gmail.com so we can explore this further? Thanks, Audrey


speker ideas



Hi, I run a support group via a tele conference. I am looking for a speak for the group on the topic of employment. Maybe on good adaptations on the job and how to find jobs. Thanks!


Re: How Can a Support Group Help in Adjusting to Visual Impairment?



Hi lisadbranham,

My name is Audrey and I am a Peer Advisor and Support Group Advisor for VisionAware. I also have Retinitis Pigmentosa and was diagnosed at age 25. I know this is a scary time for your son and for you...but I can tell you though there will be challenges in the future, it is not a death sentence. RP progresses at different rates for everyone and he will probably maintain useful vision for some time. And there are many tools and resources to help him make the most of his vision as it changes. I was actually able to work as a nurse for 28 years and most of that time I was considered legally blind.

A support group can be invaluable to you and your son in learning about resources in your area, learning techniques from others living with vision loss and being able to express fears and concerns. VisionAware has a national directory of services at this link: http://www.visionaware.org/directory.aspx I entered Colorado and came up with several agencies that may be able to help you find support groups. I recommend calling Center for the Blind in Littleton as a place to start. They will have information about National Federation of the Blind Chapters in the community. Also, the Center for People with Disabilities in Thornton recommended contacting Lisa Nelson, manager of Beyond Vision at 303-790-1390 ext 205 for more information.

There are also national organizations such as Foundation fighting Blindness and American Council of the Blind that can help.

In addition, there are some Facebook groups that are closed groups for people with RP and they can be very informative and supportive communities. Search Retinitis Pigmentosa in FB and several will come up.

keep in mind that your son, depending on his level of vision now-will want to contact the Vocational Rehabilitation services for Colorado when he needs to start learning new skills for living with vision loss and when he needs help with school or employment. They too offer many services that help people continue to work, study and live with blindness. They also may be able to direct you to counseling and/or support groups.

please feel free to contact me directly at amdemmitt@gmail.com if ou have specific questions. I wish you and your son all the best as you start this journey. audrey


Re: How Can a Support Group Help in Adjusting to Visual Impairment?



My son (29) recently diagnosed with Retinitus Pigmentosa needs a support group in the Denver area. I also need to find a group for parents or loved ones. Thanks for the help.


Re: Is a support group a good option?



Yes,a support group is indeed a wonderful and very recommended option!!As a person with legal blindness,which I was born totally blind,and through surgery had sight restored to legal blindness back in 1965,at age 5 months and then at 1 year through cataract surgery,I am a member of a support group through my local blind center,and it has indeed been very helpful to me and also to others who are going though vision loss right now,to be a mentor/help someone going through the process now,and helping them to cope and letting therm know that they indeed are NOT alone--that many others have/are losing their vision,and that there is nothing shameful about ir,and nothing shameful about asking for help either!!!Hope this does help you!!!


Re: Is a support group a good option?



I so agree that connecting with others in a support group can be a very positive step. Many people are surprised at the number of people, especially older individuals, who are experiencing vision loss. Not knowing about resources can be devastating while knowing about the range of public and private services can give one hope and assurance.
If anyone is interested in starting or improving an existing group in your community, contact The Hadley School for the Blind at 1-800-323-4238 or at www.hadley.edu to get information about their distance education courses including Self-Help Groups: An Introduction or Self-Help Groups: Advanced Topics.


Re: Is a support group a good option?



I live in a small community where there are very few services for the visually impaired, including public transportation. For years , I struggled alone to find support and resources. I decided to start a Support Group to assist others who are affected with vision loss. The group started with 3 and in one year we have grown to 21 members. I had no idea there were that many individuals in my area with vision loss! The mission of "Envision" Support Group is to encourage, empower and engage its members to achieve greater independence and meaning in life. We are focused on education, resources, and emotional support. In the safety of a Support Group, members are able to grieve, explore resources, practice new skills, socialize with others who understand their unique challenges, and inspire and be inspired toward new goals. It is a place to learn to "reinterpret" the challenges of vision loss and "reinvent" oneself. Support Groups help their members envision the possibilities of life with vision loss, provide a sense of community, and give HOPE. Consider starting a Support Group or attending one in your area.


Re: Is a support group a good option?



Yes, I think a support group is a good option especially if you are new to blindness. It will help you to feel that you are not alone and to trouble shoot situations that come up daily in your life. It can also create long-term relationships that can provide additional support long after you have stopped attending the group.



Re: Is a support group a good option?



I think it's great to express our feelings we are dealing with with others who actually understand what we are going through. Barbara


Log in to Post a Reply