By Dick Mooney

"We don't have a speaker for the next meeting!" These are words that can strike panic in the hearts of support group leaders!

Any time two or more group leaders gather together, the discussion sooner or later turns to how to solve the problem of selecting topics and speakers for meetings. Like the search for the Holy Grail, everyone seems to be looking for an easy answer. But I fear there isn't one. The only answer I know is hard work.

Here are some hints that may make the work easier:

Reduce the number of "original" programs you need to arrange each year. Experience seems to indicate that the hardest part of program administration is thinking up good topics. Since most groups meet monthly, this is something that has to be done for twelve meetings a year. Right? Not necessarily. One strategy for simplifying this task is to identify a number of programs that will be repeated each year. If you select four "annual" programs, for instance, that reduces the number of "original" programs you need to select to eight. Remember, the culture of your group and what programs have been successful in the past must be taken into account here. As examples:

1. The December meeting could always be the annual holiday party and/or a picnic could replace a regular summer meeting. The good news is that these could reduce the number of "original" topics needed each year. The bad news is that arranging parties and picnics can be labor intensive, since people will have to be drafted to bring food and perhaps provide entertainment.
2. One meeting a year-maybe the January meeting-could be tapped as an "organizational" meeting where attendees can be brought up to date on the business aspects of the group and a facilitator can lead a goal-setting and program topic selection discussion for the coming year.
3. One meeting a year might be eliminated altogether. Since many people travel during the summer, the July or August meetings could be candidates for this.
4. If you look back at past meetings, you will find topics that have proven to be good attendance draws or ones that have been particularly enjoyed by attendees. These can be repeated annually on either a regular or an ad hoc basis. Remember, most groups' attendance will probably be transitory with members drifting in and out as their information and support needs are satisfied. Thus, you may be presenting to substantially different groups each year. Here are some examples from my experience with the Mutual Amputee Aid Foundation in Los Angeles:

• Members were sufficiently enthusiastic about a gait clinic program that it was felt a clinic could be presented each year. Just remember 1) you will need to line up "subjects" in advance and be sure they attend and are dressed appropriately, and 2) a different prosthetist-clinician should be selected each year to avoid accusations of favoritism.
• Everyone just loved the program that was presented by Canine Companions for Independence. The dogs were always cute and the programs always interesting.
• An annual program about exercise for people with disabilities proved to be very popular. The attendees really got into the spirit of this. At MAAF, there was a member who did this as a profession but it is relatively easy to find physical or recreational therapists locally if there isn't a qualified member presenter.
• Another group in Southern California decided to present an annual prosthetics faire, at which a number of local certified prosthetists were invited bring products and information to share with attendees. Tables were set up around the room for the prosthetists, and the attendees circulated.
• If there are many group members who have diabetes, a good "regular" program could cover subjects of particular interest to them, such as care of the remaining foot, diet and exercise, etc.

Select presenters and let them select topics. For some of the programs that remain to be selected, one strategy is to start by identifying presenters, letting them select a topic within their expertise. Naturally, almost any health care professionals and administrators at firms or governmental agencies that deliver services to people with disabilities, such as the department of rehabilitation or department of motor vehicles, are appropriate speaker candidates. Among the candidates will be prosthetists, medical supply people, travel agents, attorneys, acupuncturists, etc. You should carefully and clearly tell all of them that you expect them to educate your members to be better consumers of whatever product or service they represent and that blatant "commercials" for their own company will not be tolerated.

Select topics and then select presenters. For the remainder of the programs that remain to be selected, a topic can first be selected and then an appropriate presenter can be selected. What topics will be best for your group? There are two ways to evaluate this. The first is to collect potential topics from various formal research studies that have focused on amputees' needs for information in general, and the second is to survey your members to learn their interests.

Research Studies - One source of this kind of research is the Internet. (Another does not exactly represent academic research, but leaders can come up with a pretty good topic list by reviewing past issues of inMotion.) Here are the results of one research program that may save you a search.

In a 1991 study, Timothy B. Staats, Ed.D. surveyed 253 amputees across the country, asking them how important 25 amputation-related subject areas were to them. For the purpose of summarizing the results, Dr. Staats divided the 25 subject areas into three groups, 1) prosthetics information, 2) medical information, and 3) psychosocial information.

Dr. Staats found that the subject amputees were most interested in was in the prosthetics category, relating to the fit and comfort of the prosthesis. The second highest ranking subject was in the medical category, relating to information provided by physicians, nurses, and therapists before and after surgery. The top psychosocial item related to information about the psychological aspects of wearing a prosthesis. The top 10 areas of interest were found to be: 

1. Fit and comfort of the prosthesis 
2. Information provided before and after surgery
3. Prosthetics rehabilitation
4. Learning to use the prosthesis
5. Medical problems related to prosthesis use
6. Types and selection of the prosthesis
7. Choosing a prosthetist
8. Repair, care, and function of the prosthesis
9. Cost and payment for the prosthesis
10. Information about skin problems

Member Surveys - If you have an annual organizational meeting, this is an ideal time to inquire into your members' preferences for future program topics. A good facilitator can improve the interactivity, and thus the yield of such a verbal survey. It also helps to "prime the pump" with several of your own topic ideas. You will find that some members not only have good topic ideas, but they will also be able to suggest presenters from their own personal experience.

Surveying members in writing to ascertain the subjects they are interested in can be a frustrating experience because many members, for a variety of reasons, will not complete and return their surveys. Simply asking them to write down the subjects they are interested in almost never works well. A better method is to develop a long list of topics and ask them to check the ones they are most interested in. If you don't want to develop your own list, you can use the list of topics that follows. Including an addressed envelope can help improve the response.

Here is a comprehensive list of topics that will give you a place to start.

Prosthetics Issues

Latest Advances in Prosthetics - Get a panel of local prosthetists (a panel prevents criticism that you are showing favoritism to one) to speak about the latest advances in prosthetics. Instruct one to talk about and demonstrate feet and ankles, one about knees, one about suspension systems, one about recreational adaptive equipment, and one about arm prostheses.

Prosthetics Faire - Invite all local prosthetics facilities that employ certified prosthetists to show their wares at a prosthetics faire. You can set up tables around the edge of your meeting room on which they can place their literature and samples. They can then stand by their tables while your members circulate around and speak to them.

Prosthetist Certification - Invite The American Board For Certification In Prosthetics and Orthotics (ABC) to recommend a qualified local person to speak about how prosthetists are certified and what certification means to your members. 
The American Board For Certification In Prosthetics and Orthotics
1650 King Street, Suite 500
Alexandria, VA 22314-2747
You can contact Lance Hoxie, the executive director, at 703-836-7114.

Upper Limb Amputations and Prostheses - Since the great majority of your members are leg amputees, they may be interested in hearing how arm amputations and prostheses are different than the ones they're familiar with. Qualified speakers will come from among occupational therapists, rehabilitation specialists and prosthetists who specialize in treating those with upper limb loss.

Prosthesis Financing Issues - Only those who have independent resources are safe from problems in getting their prostheses and prosthetic supplies paid for. In general, prosthetists are the experts in knowing how to get reimbursement for their services and in finding sources of funds for those who are without insurance.

Functional Levels and Lower Limb Prosthetics - The prosthetic components Medicare will pay for are determined by your "functional level." If your functional level has been understated in your prosthetic prescription, you will end up with an inadequate limb. A knowledgeable prosthetist can be invited to speak about the importance of appropriate prosthetic prescriptions and how to get your functional level redefined if your physical situation has improved.

Gait Clinic - Gait clinics are usually very popular. Invite a competent prosthetist to conduct one for your members. There will only be time to work with three or four members, who should be recruited and prepared in advance, but everyone will learn from what they see and hear.

Medical Issues

Amputation-Related Pain - Find a knowledgeable person to speak about stump pain and phantom pain. You can start looking among anesthesiologists and surgeons. You may have to expand your search to rehabilitation specialists, physiatrists, and prosthetists.

Non-Traditional Medicine - Find a Doctor of Oriental Medicine to speak about how oriental medicine works and how it may provide a solution to amputation-relater pain.

Care of the Residual Limb - Invite a local physician who specializes in working with amputees to speak about dermatological problems of amputees, including preventative measures and treatment methods.

Foot Care for People with Diabetes - Invite a diabetes specialist to speak about diabetic foot problems and preventative measures.

Circulatory Disease - Many of your members have lost limbs due to a variety of circulatory diseases. Invite a physician specializing the treatment of these diseases to talk about what to do to help prevent advance of the disease into the other leg.

RSDS, Reflex Sympathetic Dystrophy Syndrome - RSDS can become a chronic source of pain in some amputees but it typically not well understood. Perhaps you can find an RSDS specialist to describe the syndrome and its treatments.

Acupuncture
Hypnotism 
Herbal and Vitamin Therapy - Most of your members have a variety of aches and pains that traditional medicine has only been partially successful in resolving. They may be interested in knowing more about the alternative therapies that are available. It would be ideal if you can find practitioners who have had experience treating amputees.

Sports and Recreation

Amputee Golf - Get a representative of the National Amputee Golf Association from their regional group in your area to talk about golfing for amputees.
National Amputee Golf Association
P. O. Box 23285
Milwaukee, WI 53223-0285
800-633-6242

Sports and Recreation - Many of your members may like to be active again if they knew about adaptive sports programs in your area. If you can find one - or more - you can invite a representative to come and talk about what they offer.

Physical Conditioning for Amputees - Many people with amputations lead a relatively sedentary life. This negatively affects their weight, cardiovascular capacity, and feeling of well-being. There are therapists and physical education professionals who specialize in working with those having disabilities. Find one and invite them to lead a meeting. Everyone will enjoy it.

Recreational Opportunities - Disabled Sports USA has chapters in many cities. They sponsor recreational and "learn to" activities for people with all levels of disabilities. If you can find a local chapter invite a representative to explain their program to your members.
Disabled Sports USA
451 Hungerford Drive, Suite 100
Rockville, MD 20850
301-217-0960

Legal Issues

Dispute Resolution - Invite a member of the American Arbitration Association to speak about mediation and arbitration as ways to resolve your members' potential disputes with medical and prosthetic service providers. If you find a local chapter of the American Arbitration Association in your phone book, call them, or you can call your local Bar Association. Failing this, you can contact the American Arbitration Association national office at 212-484-4000.

Legal Rights of Amputees

• Find a local attorney who specializes in labor law and the Americans with Disabilities Act (ADA) to speak about amputees' rights as employees and about the accessibility provisions of the ADA.
• Find a local attorney who specializes in personal injury and malpractice to speak about professional liability and the amputee's legal remedies in disputes with service providers.
• Find a local attorney to speak about warranties, lemon laws, and consumer protection with respect to disability-related products used by your members.
• Social Security and Social Security Disability issues are complex and confusing. Find an attorney who specializes in that field to explain these issues to your members.

Daily Living Issues

Wheelchairs and Scooters - Along the lines of the prosthetics program described above, invite people from two or more local medical supply houses to speak about how to be a smart consumer of wheelchairs and scooters. 

Automobile Adaptations - Find a local firm that specializes in adapting cars and vans for drivers with disabilities to speak about the types of adaptations that are available. If you don't know such a firm in your area, contact:
The National Mobility Equipment Dealers Association
909 E. Skagway Ave.
Tampa, FL 33604
800-833-0427

Disabled Parking Rights - Invite a representative of your local Department of Motor Vehicles to speak about their rules governing licensing of people with disabilities and for obtaining disabled parking permits. Also invite a representative of your local police department to speak about parking enforcement and what your members can do to help.

Disaster Preparedness for People with Disabilities - Invite a representative of your state, county, or local emergency management or disaster preparedness services to speak about special steps your members can take to survive various kinds of disasters. Look in the government pages of your telephone book for the appropriate place to call.

Travel for People with Disabilities - Invite a travel agent specializing in travel for the disabled to speak about air travel, accessible hotels, cruising, and the like. If you don't know of a travel agent in your are that specializes in travel for people with disabilities, contact:
American Society of Travel Agents
http://www.astanet.com/pub 
christiw@astahq.com 

Personal Safety for Amputees - Your local police department may be able to send you an individual who specializes in teaching people how to stay safe personally. As a bonus, that person will also be experienced in advising persons with disabilities.

Emotional Issues

Emotional Recovery of the Amputee - Locate a psychologist or psychiatrist who works with people who have lost limbs to speak about the emotional effects of amputation, including the grieving process and how to reach acceptance.

Sexuality and Disability - This has nothing directly to do with "having sex." It does have to do with disability and its effects on self-esteem and one's feelings of attractiveness to the opposite sex. Some social workers and psychologists specialize in this area. If you can find one, it would make an interesting meeting.

Fun Programs

Funny Things That Happen To Amputees - If you know your members well, you will know who has had humorous experiences and can talk humorously about them. If you can put together a panel of three or four of these folks, the audience will probably chime in with their humorous experiences also.

Canine Companions - Everybody loves the dog program! Canine Companions for Independence is an organization that trains and provides working dogs to people with all kinds of disabilities. Contact the national headquarters to see if they have a local group that will send representatives with their dogs to describe how the dogs are selected and trained and to demonstrate what they can do.
Canine Companions for Independence-National Headquarters
P. O. Box 446
Santa Rosa, CA 95402-0446
707-577-1700
info@caninecompanions.org 
http://www.caninecompanions.org 

Hobby Night - Many of your members have hobbies they would love to show off. Some may be photographers, quilt makers, needleworkers, or painters. A meeting when they can bring samples of their work and describe their creative process will be enjoyed by all.

Orientation to Services

Amputee Coalition of America and the National Limb Loss Information Center - The ACA has appointed member-representatives to serve all regions of the United States. Their representative for your region can possibly be sent by the ACA to talk about the ACA and NLLIC programs and how your members can benefit from them. Contact the ACA to request this program.
Amputee Coalition of America
900 East Hill Ave., Suite 205
Knoxville, TN 37915-2566
1-888-AMP KNOW

State Department of Rehabilitation - Your state probably has an agency by this name or one close to it. Invite a representative to explain to your members what they do.