How to Organize Parent Support Groups -- cleft lip/cleft palate

SUGGESTIONS ON HOW TO ORGANIZE CLEFT LIP/CLEFT PALATE PARENT SUPPORT GROUPS

Excerpt from the brochure Perspectives by PRESCRIPTION PARENTS, INC., P.O. Box 920554, Needham, MA 02492 617-499-1936

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We have listed below the early steps that we took to begin formulating and implementing our program; we hope they might be of some small help by way of suggestion for other parents attempting a similar venture.

Write down exactly what the goals of the organization will be. These should be typed and duplicated as they will be your first public relations tool and will help recruit endorsers.
Draw up a model of the organization, including roughly the major areas of responsibility as you see them. These will grow and change; we found it easier to work on one or two areas slowly rather than attack on too many fronts. It is not advisable to appoint positions too firmly until the organization has really begun as individual strengths will become apparent.
Outline specifically any plans for publicity, special programs, sub-committees, community involvement, etc. that you can visualize.
Contact medical personnel whom you know to be interested in treating cleft lip and palate children. Sell your idea and their involvement. This step is vital -- you need solid backing form highly qualified medical people from at least one reputable hospital to begin; however, you will note that Prescription Parents is not affiliated with any hospital nor does the organization endorse any particular medical treatment. The more diversified the areas of interest and their medical affiliations, the stronger you organization will be. Some of the Advisors will be more active than others; for example, some may be willing to help you with public appearances, or to speak at meetings, etc., while others may only be willing to lend their names.
Also, ask these specialists to recommend a few competent parents who could work together to set up a loosely organized group to help with the leg work.
After working with physicians and specialists to receive their endorsements, ask them to send out letters for you to their patients (in this case, probably their parents0 whom they have treated in the last five or ten years, inviting them to a meeting. Give yourself plenty of time between this step and the actual meeting as you and the few parents recommended to you will have to work on public relations in the interim. You will also have to make careful arrangements as to the meeting place, etc. This can probably be most easily handled by working closely with a few of the most enthusiastic physicians.
Contact any media you can about the upcoming meeting -- emphasize the uniqueness of your idea (i.e., parents working with medical professionals to become involved through understanding in the development of a child afflicted with the second most common birth defect in the U.S., yet one which usually receives little public attention in terms of funding, educational programs, etc.) We booked several television talk shows, particularly a local medical program which brought us many members. These programs should be arranged so that you and one or two of the key medical personnel can appear to explain the goals and possible programs. Allow enough time to set up these programs -- they are usually booked anywhere form one to three months in advance. Try to synchronize the appearance with your first meeting, to which the Medical Advisory board should be invited, so that they occur within a week of each other. In addition, you can set up press interviews for yourself and several of the doctors, possibly working with the Public Relations Department of the hospitals involved. These interviews have to be arranged with the utmost of care. They should also be appropriately timed for the first meeting. For more local papers, you can simply submit a press release which is interestingly written and gives pertinent information.
For your first meeting:

designate someone to be responsible for registration of parents as they arrive, using index cards -- these will become your working mailing list.
be sure that as many as possible of your Medical Advisors can attend and would be willing to speak and answer questions.
make appropriate arrangements for coffee and refreshments.

You are now well underway. Using your ideas for committees, etc., you will have to introduce these to the parents and accept their suggestions for interest areas. You might solicit volunteers at this first meeting, but do not assign responsibilities until you are more organized. Now begin to work with volunteers to plan programs and get your plans into operation.
The Newborn Program as described in our brochure and our aims and Goals is an integral part of our program that requires careful organization by a competent person. We carefully assessed ourselves and our strengths before assigning the chairmanship of this program. The Chairman of this program, working wit the Officers, assembled teams of mothers who would be willing to go through a training program and then to work with new mothers. In choosing these mothers, care must be given to work with the physicians who hopefully will recommend your services; also attention must be given to geographical distribution and to the hospital center providing care. As much as possible, it is preferable to choose mothers form the center treating the newborn to work with the individual case. In setting up the Newborn Program, we were careful to establish guidelines for mothers in talking with new mothers. We are not physicians, nor are we qualified to dispense medical information or advice. Our sole function is supportive: to help with feeding and at-home care by giving tips which helped us in caring for our infants.
Your imagination is your guide in setting up activities for publicity, fund-raising, etc. This is depend upon your goals. You will obviously need money for office supplies and ailing at the least. In Boston, we ran a raffle, worked with local celebrities and teams, most notably the Celtics, and with government representatives.
After you have determined your basic program, have some funds, and can see the forest for the trees, you might wish to design a basic brochure to explain who you are and what you do.
If you find yourself attracting large numbers and funds, etc., you might consider incorporating as a tax-exempt, non-profit organization as we did. Prescription Parents is governed by a Board of Directors comprised of both parents and professionals; we have the services of an attorney who generously donates his time and a member who is a Certified Public Accountant who handles tax matters, etc. for us. In addition, once our mailing list rose above 200, we invested in a bulk permit which cut costs considerably. (Also, at this time we found methods to streamline our mailing by using computerized cards to print our envelopes, etc.)
As you grow, you might wish to contact federal and state agencies to determine what is available in the way of funding and service, both medical and educational, in your state. We have been most active advocates in these areas and have found most agencies most cooperative and willing to listen to us; many of them list us as a referral service.
You might also contact parent groups representing different problems as you may find you share similar concerns regarding the quality of public medical and educational programs.
You might wish to form a speakers' bureau where parents would be willing to speak to various groups about their concerns. We have addressed numerous students, teachers, medical interns and residents, student nurses, and professionals interested in the parent's perspective.
You should register your group with the American Cleft Palate Educational Foundation, 331 Salk Hall, University of Pittsburgh, Pittsburgh, PA. The ACPEF is a non-profit foundation established by the American Cleft Palate Association to promote public and parent education regarding the problems of our children. They maintain a list of all parent groups in the country and from time to time solicit opinion from them on a number of topics. There is also the National Cleft Palate Foundation, 1829 East Franklin Street, NC 27514, 800-24-CLEFT, e-mail: cleftline@aol.com.
After we had begun and got our feet wet, we started a newsletter which initially contained announcements about the internal workings of Prescription Parents, but which has grown to include information from professionals of interest to parents, as well as book reviews, and basic information about services and programs in Massachussets.

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