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Reaching out.

"Reach out and touch someone" is never more appropriate than when it's applied to those who have disabilities, disfigurements or debilitating diseases. When people meet to ventilate -- to share their pain and sorrow -- they also exchange wisdom and valuable information. There is great strength in such bonding and a greater impact upon society.

Support Groups

Each decade seems to spawn a particular style of networking. The self-help or peer support group format that emerged in the 80s continues to gain importance and effectiveness. My venture into the network of peer support began because I was born with bilateral cleft of the lip. I wanted to help people with similar problems obtain the right surgery and financial aid.

In 1978, with a small nucleus of dedicated volunteers, I created an ad hoc support group called FACE (Friends For Aid, Correction and Education of craniofacial disorders) to fit our needs. Since then I have become deeply involved with the function of a community-based support group which has grown in numbers and has greatly expanded its free services. The emphasis in these groups is on advocacy, responsible paraprofessionalism from the families and a close relationship with medical and counseling professionals.

Through the years, parents and professionals have acquired an understanding of each other's roles. It is up to parents to provide other parents with the one-to-one emotional support necessary when dealing with traumatic birth experiences. Understandably, doctors must remain emotionally detached (for the most part). When I rounded FACE, I contacted existing support groups nationwide who shared their programs with me. In turn, we now answer the deluge of requests for information about our own organization. In 1979 there were very few parent groups offering support regarding craniofacial disorders. Today there are more than 200 scattered throughout the United States and Canada. We hope that someday all key cities will provide such resources.

Not everyone has the ability to cope with an existing or ongoing problem. When the problem involves a child who is not "standard issue," coping is often difficult (or sometimes impossible) to achieve without some kind of help. Support groups of all kinds understand the importance of receiving firsthand assurances and of sharing the emotional and deeply personal problems with someone who has "been there." There is a unique kinship between fellow sufferers that no amount of professional expertise can ever replace.

Most parents of a child with any kind of disability run the gamut of emotions -- denial, sadness, anger and guilt -- before accepting the reality of a craniofacial disorder or some other disability. For instance, an infant born with a cleft is an awesome sight and the parents, often in total ignorance of this particular accident of birth, are justifiably frightened. Support groups, if promptly summoned, can guide these troubled people. They can help cushion the shock of giving birth to a child with some kind of disfigurement, paving the way for repair and ongoing treatment (if possible or necessary).

Experienced volunteers can also help parents make decisions regarding the care of a special child that are educated and not based only on emotions, and can help implement a long-range care program. For example, a support group member whose child has successfully gone through corrective surgeries for cleft is able to provide before and after pictures and can discuss the impact of the child's birth on a paraprofessional level.

Such volunteers have become professional in their approach because of long years of active involvement in similar situations. In addition, the special training they have received from the FACE Outreach Program (visitation) qualifies them for an informal type of listening and counseling. They can identify with the doubts and fears, and are aware of all the latest techniques in specific areas.

FACE as an Example

Volunteer support groups are usually parent-led and the services they offer vary from one group to the next. FACE serves as a role model for newly formed memberships. Groups all over the country have adopted its policies, its unique public awareness programs and its staunch policy of advocacy. FACE is one of the few support groups which raises money for educational purposes and to provide financial aid to families in desperate need. All FACE volunteers serve without pay. In 1985, FACE received the prestigious Golden Gavel Award for Service to Youth.

Educational-social meetings allow new and veteran parents to interact in a casual, unstructured atmosphere and have proven their effectiveness. The Sarasota-based group has been cited by the medical profession for its policy of accepting all craniofacial disorders rather than focusing on one anomaly. Since all parents involved share the same fundamental problems, the groups remain close-knit and with the increasing numbers, have more of an impact on the public.


Finally, I believe that advocacy should be the basic thrust of all support groups -- the right of any human being to receive uniform, quality treatment, and most importantly, the surgeon or treatment center of his choice, regardless of income. Members need to be aware of the obligations of insurance companies to provide adequate coverage for a child who is born with a disorder of any kind and to pay promptly.

Members need to know their rights and that sometimes they must fight for them. On those occasions it is good for parents to know that they can call on fellow support group members to stand by them. Decidedly, there's strength in numbers of people who have the same goal.

The common complaints volunteers hear from troubled people are "Where were you when I needed you?" or "Why didn't anyone tell me about you? I didn't know you existed." There needs to be a vigorous publicity campaign aimed at alerting the community of the existence of local organizations offering guidance and emotional support in specific areas.

You can obtain information about a support group which is appropriate to your needs by calling your local newspaper, social service and health care agencies in your area or a Helpline if one exists in your community. Your doctor or hospital sometimes keeps a list of such services on file.

For your state's Parent Training and Information (PTI) Center phone number, contact the National Parent Network on Disabilities, 1600 Prince St., Suite 115, Alexandria, Va. 22314, (703) 684-6763. A state-by-state listing of PTIs is included in Exceptional Parent's Annual Directory of National Organizations, which also lists various national support groups and information agencies by specific disorder or disability.

Bernice Brooks Bergen is the founder and executive director of FACE of Sarasota, a support group for people with cranio-facial disorders and their families. She lives in Sarasota, Fla., with her husband, John, and has three sons and twin granddaughters. Bergen was born with a bilateral cleft lip and went on to become a professional actress and model. She is a member of both the Florida and American Cleft Palate/Craniofacial Associations and received the 1991 National Award for Exceptional Leadership and Contribution Toward Enhancing the Lives of Those With Cranio-facial Disorders from the Cleft Palate Foundation.
Support Group Objectives
Ideally, support groups in any problem area
should offer the following:

1) Monthly meeting dates to allow ventilation
 tion of feelings and sharing of personal
 experiences, along with educational and
 informative programs.

2) An educational program structured to
 promote public awareness of the disorder
 and any accompanying prejudices.

3) The distribution of literature explaining
 the function of the group.

4) A Newborn Outreach Program designed
 to contact new parents, upon request, as
 soon as possible after the birth of a child
 with the support group's disability.

5) Formation of a resource library containing
 all available educational materials and
 lists of service groups and government
 ment agencies which offer assistance.

6) A careful record of case histories handled
 by the group, including a follow-up of each.

7) Opportunities for social interaction.
COPYRIGHT 1993 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1993 Gale, Cengage Learning. All rights reserved.

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Title Annotation:includes related article on support group objectives; support groups for parents and family of exceptional children
Author:Bergen, Bernice Brooks
Publication:The Exceptional Parent
Date:Jul 1, 1993
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