VisionAware

By Josephine Defini, LCSW and Peer Advisor

Helping professionals are often stymied when confronted with individuals and family members who may be experiencing feelings of hopelessness, isolation, or frustration due to vision loss. According to national poll conducted by the American Foundation for the Blind in 2007, people fear blindness more than almost any other condition. Indeed, the emotional adjustment to vision loss is often compared to that of grieving the death of a loved one. Hence, it’s no surprise that the reaction to vision loss is difficult, both for the person experiencing vision loss and for their family and friends. Family and professionals may not know the steps to take to get help or the basics of how to assist someone new to visual impairment. You can find more helpful tips in the VisionAware Getting Started Kit.

How to Begin Working with People New to Vision Problems

If you’re a professional in a field other than vision rehabilitation, consider your own attitudes and beliefs about blindness. The most important concept for you to grasp is that life with visual impairment or blindness can be just as fulfilling, joyful, and satisfying as life with vision. With proper tools and training, a person who loses vision can be exactly the same person he or she was before vision loss. Keep in mind that the individual’s emotions may interfere with their ability to move forward and deal with the challenges of vision loss. These emotions may interfere with the person’s willingness to obtain services necessary to learn the skills to live with visual impairment or blindness. Also, in times of crisis or need, it is hard to trust. Before an individual is ready to accept help, you must gain their trust.

Addressing the Individual and Family Members

Understand that blindness happens to the whole family and that each family member will have their own unique reactions and will need time to digest what is happening. If family members are present at the time of the interview, be sure to ask the person with vision loss if it is okay for family members to be involved during your conversation.

It is important to understand the individual’s situation/environment. Is he or she newly visually impaired or totally blind? What is the living situation? Does he/she live alone or are there family members, neighbors, a spouse, community support involved? Be aware that just because you offer help doesn’t mean that the help will be welcomed or accepted. The individual will most likely be struggling with the idea that he/she is faced with vision changes and may not be ready to accept the changes that have turned their world upside down. The person needs time to process what is happening to them, and to ingest and digest information. There must be a period of time to grieve. Grieving has many faces – disbelief, fear, anger, etc. Depression is often a common factor with the person and their family members. It may be turned inward resulting in the person withdrawing or it may be turned outward against those who are attempting to assist. Family roles may have been altered depending on what position in the family the person held.

As with the person with vision loss, family members and friends will also be experiencing a myriad of feelings. They may be at a loss with how to interact with their loved one.

What Is Your Professional Role?

It is important to describe your role to your client and their family members with whom you have made contact. You will want to address the following questions:

• What is your professional role?
• What services can you offer?
• What services can you refer them to?

It may also be helpful to assess readiness to receive assistance and identify any barriers or resistance to receiving help. Also, you will need to determine the client’s learning style and preferred format for receiving information so that you can accommodate their needs appropriately.

Assessing the Situation

Carrying out a psycho-social assessment may be the next step. If possible, this type of assessment should be shared with the team of all professionals who work with the consumer with vision loss. It could include assessing the following areas to identify areas of need, strengths and weaknesses, and resources that may be helpful. This information could be used to create a comprehensive care plan:

• Understanding of Vision Diagnosis and Other Health Conditions
• Stage of Acceptance
• Psycho-Social Observations (You may want to assess for depression and suicide risk)
• Coping Skills and Strategies
• Support Systems
• Motivation to Change and Learn New Skills
• Self-Advocacy Skills

This type of assessment will give you a picture of the needs of the consumer and his/her family members. It is important to discuss the assessment results with the client and use it to develop a plan of care.

Explore Life Experiences with Your Client

Remember that your client has had a lifetime of skills and experiences. Most likely she has lived a full life, raised a family, had a career, been a community participant and now may be reduced to feelings of helplessness and frustration. So it is important to stress that she can use her life skills in learning to cope with vision loss. Be positive and give her hope for the future.

Finding Appropriate Services

You can introduce a variety of services such as counseling or community mental health programs, rehabilitation, low vision services, and vocational rehabilitation. If and when your client is ready for vision rehabilitation services, depending on where they live, you can provide her with information about state services or other local community programs which can provide the necessary rehabilitation services.