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Austin Amputee Newsflash Issue Number 1 July 1994 Welcome to the first issue of the Austin Amputee Newsflash. This newsletter is for all to enjoy. The newsletter will be published three times a year, July, November, and March. As time marches on it is my hope to add more improvements to each issue. I hope all will take an interest in the newsletter and send in articles, cartoons, humor of some sort and personal stories of accomplishment. It is requested that any article receive by the editor first be cleared by the author to be publish in the newsletter or include source, author name, and date of publication. This Newsletter may be download in TEXT format from the Electronic Bulletin Board "Diabetes Discussion". Phone number of the BBS is (512) 451-9737. If one needs to contact the Editor one my do so by several means. One - Through the St. David's Amputee Support Group. Two - For those with computers and modems - Through the BBS number given, or Fidonet Netmail address, for those who use Fido systems at 1:382/68, the National Amputee Echo on most Fidonet BBSes or through the Internet address to John.Hargrove@Diabetes.ConnectAmerica.com. TEXT file name of the newsletter will be AMPFLASH.0xx (.007 for July, .011 for November, .003 for March). John Hargrove Newsletter Editor Austin Prosthetics Center Presents MEET THE STAFF Several of you have mentioned that it might be fun and helpful to get to know the APC Staff - - their job and some personal information. So here goes . . . When you first arrive at APC, chances are you will be greeted by KAY STALDER or DANIELLE WOLIVER. KAY'S official title is "patient Coordinator." She has been at APC since June 1993. She schedules patients, takes care of records, and helps people get settled into treatment rooms. When you call APC for the first appointment, she will probably ask many questions related to your amputation, insurance and other personal identifying information. She will also give you information about the various services available at APC and what to expect. KAY has been married 12 years and has a four-year-old daughter. She was in the military four years and continued at Bergstrom as a Medical Assistant for three years. Her hobbies include softball, reading and crafts. When KAY was asked what she liked most about APC, she said "the staff and getting to know the patients." DANIELLE WOLIVER joined APC in February of this year. Her title is "Reimbursement Specialist". In her duties, she is the patient financial counselor, verifies and submits billing and corresponds with physicians and insurance companies. Her main focus is to alleviate your concerns about financial matters. DANIELLE has always worked in the medical field and has dealt specifically with reimbursement since 1983. She is knowledgeable of Medicare and regulations as well as standards' insurance. Outside of work, DANIELLE enjoys cooking, quilting and reading. The progressive and patient oriented atmosphere is what DANI enjoys most about APC. ------------ The following pieces are clips from the Amputee Coalition or America's newsletter. Spring of 1993 ------------ "New Horizons for the Air Traveler with a Disability" This booklet has been prepared by the Department of Transportation to provide information for air travelers with disabilities on their rights under the Air Carrier Access Act of 1986. The booklet also outlines air travel changes that take place under the American with Disability Act. The booklet is available for free from the Consumer Information Center, Dept. 608 Y, Pueblo, Co. 81009. Also available from the same source is "Access Travel: Airports." This booklet lists design features, facilities and services available for travelers with disabilities at 553 airports. Legislative Matters By: Peter Thomas The Amputee Coalition of America has been actively involved in the national health care reform debate to ensure that the interest of O&P consumers are recognized. 1. The ACA met with the President's Task Force on National Health Care Reform in early March to express the following points that must be addressed in any health care reform package. * Quality technology appropriate orthotic and prosthetic device must be included in any basic benefits package; * Consumers of orthoses and prostheses must have the ability to choose the O&P practitioner that serves their individual needs best; * O&P consumers must also have the ability to choose, in consultations with their physician and prosthetist/orthotis t, the type of O&P device most appropriate for their needs; * The unique nature of O&P services (i.e. custom fit devices) in the health care delivery system dictates the necessity for consumers to be able to retain effective choice; * The quality of O&P services must not be sacrificed or diminished in the name of cost containment. The ACA will continue to work with the President's Task Force and with Congress as health care reform proposals develop. All indications are that President Clinton will unveil in May a reform proposal based on "managed competition," where the private insurance system remains largely intact but is significantly regulated. Both the public and private health insurance systems would be expanded which would likely require some form of revenue raiser. President Clinton's primary goals are to expand access to care, contain health care cost, and be as comprehensive as possible in coverage. 2. ACA has also been shoring up Congressional support for the concerns of persons with disabilities in health care reform. ACA recently expressed disability concerns in meetings with Senator Kennedy (D-MA) and Senator Mosely-Braun (D-IL). Discussions concerning amputees and users of orthoses were particularly well received by these important legislators in the health care debate. O&P Research Progress An excellent approach to lowering the long-term health care costs of O&P consumers is to conduct outcomes research on various technologies to identify their cost- effectiveness. The National Center for Medical Rehabilitation Research (NCMRR) has several highly- scored O&P research proposals ready to be funded. Topics include studies in skin integrity where the residual limb meets the socket of an artificial limb, studies on sensory perception of the orthosis or prosthesis, and studies on amputations in persons over age 65 due to vascular complications. With this in mind, the ACA recently submitted testimony to the House Appropriations Committee in support of a $20 million fiscal year 1994 budget for the NCMRR, an increase of $10 million. ACA will continue to work with Congress to secure adequate funding level for O&P research. ---------- Nashville National Meeting - Empowerment, Education, and Contact By: Laura Halliday One thing comes to mind when I reflect on the three days I spent in Nashville. The commitment of the people I met was inspiring. We arrived on a sunny day and were shuttled to our hotel near Opryland. The opening day of the meeting was comprised of a series of speakers welcoming us to Tennessee, Discussing progress toward the goals of ACA and outlining the contents of the conference. Mary Ann Novotony, President of ACA, gave the keynote address that began with an anecdote about travel. Sometimes one's plans are rerouted without notice. Imagine that you've planned a trip to Germany. When you get off the plane, you discover you've landed in Italy. What a shock!! What will you do next? Are you going to stay in the airport for the rest of your life? or are you going to Buy a new guide book and trade in your german phrase book for an Italian one. The point behind this story is that Italy is not worse or less than Germany - just different lifestyles. Sometimes despite well-laid plans, life throws unexpected curves. this story illustrates the potential education and personal empowerment of amputees. The first day ended with a nice meal and square dancing. I was impress by the enthusiasm of the Knoxville Support Group and hospitality of ACA members. The remainder of the conference focused on topics related to lower extremity and upper extremity amputation and prosthetics, support groups, and peer visiting. I learned a great deal at state of the art technology in prosthetics and enjoyed viewing the exhibits from vendors. One of my favorite break - out sessions was "Parenting Special Kids". It was informative to hear the perspectives of both parents and professionals relating to the issues of children with limb differences. Barbara Clark, parent of a child with a congenital amputation, made some important comments about fitting children prosthesis at an early age to promote good body image, as well as, increasing their functional abilities. Although I enjoyed the entire conference, I found this session particularly worthwhile. The whole conference followed a theme of enhancing quality of life for amputees. I came away with a better understanding of the barriers to quality and some good ideas for the future of our amputee organization in Austin. The Amputee Coalition of America (ACA) Conference in Review By: Cheryl Bias The 5th annual ACA conference was held in Nashville, Tn., from March 23-26, 1994. Larua Halliday, John Hargrove, and I had the pleasure of attending. The conference was well attended with about 150 amputees, professionals and other interested parties. The President of ACA, Mary Novotny, RN, stated that this conference had about 5 times as many participants as last year So, what was the conference all about. The theme was Empowerment Through Outreach & Education. Here are some of the day-by- day coverage: March 23, 1994: * THE ACA A YEAR OF PROGRESS - by Mary Novotny - was basically a "State of the ACA" address which was helpful to those of us who were unfamiliar with the history. ACA started with a small group of amputees and professionals who were interested in reaching out to others to provide support and resources to amputees, the approximate 50,00 new amputees per year and professionals working with amputees. * TALKING BACK TO PROFESSIONALS - by Dr. Ed Jeffries (ACA Secretary & Orthopedic Surgeon)- made several suggestions including: 1) Equipment yourself with knowledge, 2) Ask questions, 3) Be assertive (vs. aggressive), 4) Be responsible for yourself and outcomes. * HEALTH CARE REFORM, WHAT WE DO NEED & HOW CAN WE GET IT? - by Perter Thomas, Esq., Legislative Director, ACA - an amputee himself, Mr. Thomas gave a very detailed report of the specific bills before Congress and his recommendations. The ACA has proposed the following 4 amendments: 1) Include repairs, maintenance and supplies, fitting & training for Orthotics and Prosthetics, 2) Assure choice & quality providers, 3) Opposed to competitive bidding especially for custom-made devices & 4) Pint of service - you may opt out of your network to go to whomever you want to. He urged we voice out opinions to our Representatives. If you don't know who your Representative is, call (202) 224- 3121 which is the Capitol switchboard and give them your zip code. In the evening, everyone enjoyed a Square Dance. March 24, 1994 * HOW TO WIN AT THE INSURANCE GAME - by Phyllis Bell who is the Director of Support Services with Sabolich Prosthetics in Oklahoma City. This was an interesting talk with 3 good handouts - 1 was a glossary of terms, another on questions to ask your insurance company about your policy and one on an explanation of payers. this topic would probably make for a good support group discussion. * There were 4 concurrent sessions in the morning - 1) Parenting Special Kids, 2) Family Support, 3) Ideas that Work for Lower Extremity Amputees, & 4) Ideas that Work for Upper Extremity Amputees. * SELF-ESTEEM - by Dr. Ellen Winchell, a psychologist in private practice - gave 12 Concepts which Can Improve the Quality of Your Life. Again, we might want to do a program based on her presentation as it's applicable to all of us. But a few concepts she mentioned included: 1) Self acceptance means realizing we all have weaknesses as well as strengths, 2) Realize the difference between self-pity & compassion, and 3) Learn to nurture yourself through self-care. She is publishing a book in June 1994, entitled, "The Road Ahead. Successfully Living With the Loss of a Limb". Price has not been determined yet. To order, call, 1-800-548-5757 (Avery Publishing). * USING EVERYTHING YOU'VE GOT' by Rev. Dr. Harold Wilke - was an incredible testimonial given by a '78 year old United Church of Christ minister, born without arms, who founded and currently directs the Healing Community/The Caring Congregation form Claremont, California. this is the only international interfaith group helping congregations and seminaries in ministry with retarded, frail elderly and persons with disabilities, including those with HIV. * The afternoon brought several Support Group roundtables discussions on the following topics: 1) Starting & Keeping A Support Group, 2) Public Relations & Publicity, 3) Newsletters, 4) Peer Visitor Programs & Training, 5) Fundraising, & General Discussion of Support Groups. March 25, 1994: * ENHANCING THE QUALITY OF LIFE - Various sports programs were presented such as First Swing, A Natl. Amputee Golf Assn. program by Bob Wilson; Bowhunting; Snowsking and Scuba Diving. * In the afternoon there were 2 concurrent sessions - 1 on lower extremity prosthetic topics and 1 on upper extremity prosthetic topics March 26, 1994: Exhibits were displayed. Throughout the conference, amputees could participate in a gait evaluation and training session. There was also a video theater with various videos running throughout each day. A resource table, which showed various publications helpful for amputees, their families and professionals. As you can see, there were so many interesting and relevant topics. I'm hopeful we can get a larger group together to attend next year in New Orleans. So, think about it! It really helped rejuvenate my enthusiasm for the group, peer counseling and motivate me to consider even more programs. COMMENTS FROM OTHER AMPUTEES On February 20,1991, the community wide Amputee Support Group asked to help write this manual. Group members (which include amputees, their family and friends and professionals) were asked to give advice to those with new amputations and new prosthesis. Here's what they said: 1. If you have an amputation, your life isn't over. 2. Seek support from those close to you; join a support group. 3. Find a support group or someone who has an amputation so you can talk with others who are experiencing amputation. 4. Avoid dependence. 5. The quicker you learn to do what you did before the amputation the better off you'll be. 6. Keep a sense of humor. 7. Find some level of acceptance as soon as you're able. 8. Talk to someone about your feelings (family, friends, and/or professional counselor such as a social worker or psychologist). 9. Never give up. 10. Find activities you're interested in and pursue them. 11. Set goals for yourself. 12. You are the same despite the amputation; you're more alike than unlike others. 13. You may feel sadness and loss and that's OK and normal. 14. Take it one day at a time. 15. Reality is a lot easier to deal with than imagination so ask questions. 16. Pay attention to yourself and don't worry about the perception of others. 17. Become an active participant in your treatment plan and encourage your family to participate as well. 18. Don't be afraid to try something new and challenging (such as wheel chair sports). 19. Reach within yourself for new found inner strength. 20. Ask your doctor and treatment team questions even if it might seem silly. Nashville the Experience By: John Hargrove It all started one day in November when I logged onto my Bulleting Board System and into the National Amputee Echo (shared message base between other BBS's). A message in the echo announces to all who read it the 5th Annual Meeting of the Amputee Coalition of America. I made a metal note to keep up with any other messages that came through. The next time I saw any thing relating to the meeting was in February when it was announcing in our local Support Group. Time was short for getting reservations in. Took I all of 30 minutes to decide to go. I sent in my reservation for the hotel, meeting, and airline. Then the great day came. Getting up at 5:00 a.m. to make my 6:30 a.m. fight I stumbled around with anticipation. Finally boarded the plane and went skyward toward Dallas then Nashville. Arrived in Nashville around 10:30 a.m., thought I was going to be the only one there for just a little bit. On landing and finding the van to the Hotel I was only one of about 10 others who decided to come early. They where from all over the U.S. Some from the east coast. Some from the west coast. Some from the mid northern states. I was the only one on the van that was from the south and what accent I do have told everybody I was from Texas. I registered for my hotel room and put my bags in. I then decided to hit the floors and see what was going on. As I came down to the first floor and got off the elevator I notice a sign announcing the meeting. Went in and low and behold there where others who had come early. I found out later some had come in two to three days earlier. Got my name badge and meal tickets. Then I walk around and talk to a few people and look at what was out for show and tell. By noon I was ready to eat lunch and went on my way. After finishing lunch and walking around a bit I notice two familiar faces, Laura Halliday and Cheryl Bias out two leaders of our Support Group. We waved and went our merry ways until it was time for the meeting to get started. We met as we all entered the hall where the total group came together to hear the opening address and other speakers of the Amputee Coalition of America. In short it was a good thing that three of us from the same group had come to the meeting. With three we pretty well had the whole meeting covered over the two and a half days of speakers that came to speak. Only problem I had was there was to much information coming across. I needed a tape recorder to record every thing. This will be reconciled before next year. The three and a half days of the meeting where great. I do hope next year we have more from our group going. As the old saying goes "The more the merrier." I made several friends and kept in touch with an officers of the ACA in the National Amputee Echo through my BBS. What will time bring next? Humor For those things which make one laugh. Classifieds Unimedics is a newly formed company in Austin to serve the needs of the diabetic community. Its owner, Mike Maurer has been in business here since 1992 and has just begun to distribute the VITAJET needleless injector in Central Texas. VITAJET is the original needleless injector, developed in Brazil and released to the world market 17 years ago. It is the leading seller in Europe and was brought to the U.S. about 10 years ago. Marketing in recent years has been by catalog and that approach has been insufficient to take care of the users needs. In late 1993 it was decided to distribute the product nationwide through a numbers of dealers close to the users to be able to respond to whatever their requirements may be. This has proven much more desirable to the consumer. Now instruction , demonstrations, repair, and other services are available right in the community. Tom Raine, Sales manager, is currently working with Austin Diabetic educators providing in-service, literature, demonstrations and other support to both new and long-term diabetics. VITAJET has demonstrated superior benefits over other similar products on the market. Its durability is evident by the lifetime warranty available. Replacement is possible through "Loss and Theft" insurance . Any repair or maintenance is available locally. Air bubbles can easily be detected visibly before administration of dose. Insulin drawn into the instrument is never lost since extra is returned to the vial. Sterilization and maintenance is over and done with in less than 15 minutes with no disassembly and boiling. If the unit is dry-fired it does no permanent damage. Minor office or in- home adjustment is all that is needed. The VITAJET corporation is devoted to needle free injectors only and doesn't dilute its efforts with unrelated products and so has become the world's largest distributor of needle free injectors. Unimedics has also made arrangements to help any client to quickly claim with their insurance company for reimbursement, which the majority of insurance companies are doing.