AMPUTEE SUPPORT GROUP OF

NORTHERN VIRGINIA NEWSLETTER

Support Group Meeting

The Amputee Support Group of Northern Virginia (ASGNVA) met at its regularly scheduled meeting on June 7, 2005, from 7:30 to 9:00 p.m., at the Telestar Court Building in Falls Church, Virginia. Quite a few people (amputees only; no professional, medical, orthotics & prosthetics or rehab) attended the meeting. I was pleasantly surprised when I arrived late to find groups of amputees talking about various amputee subjects. Imagine that – put amputees together with no agenda or meeting facilitator and they have their own meeting!

          Speaking of agendas, I have been running ragged trying to do perform almost all of the functions required to keep the support group running AND trying to get into a new leg for some time now.  Thanks to Joce Graham for taking over the position of Communications Coordinator so I haven’t had to do that for a while. And, by the way, she’s doing a GREAT JOB! And, thanks, also to Jason Bulger of Nascott Rehabilitation Services, for hauling around our library and trying to keep it current – even though we don’t seem to have any borrowers (remember, those who read succeed).

          But, back to agendas. This is very scary but George Willis and Beth Harris have been talking (not arguing) and will be working together (I hope you were sitting down) to come up with a plan and agenda for the meetings for the near future.  Please let Beth know, by calling her at 540-439-3656, if you would like to see a particular subject matter covered during a meeting.

          And as for the meetings, I’m having a problem with that.  We “advertise” that our meetings are for:

amputees, their families, friends and any professional or medical personnel interested in amputees or working in the rehabilitation field.

It looks to me like we don’t have any interested “professional or medical personnel that are interested in amputees” because we have sporadic attendance from local prosthetists and NO attendance from any other medical or rehabilitation field. That’s too bad – it sure seems like those same “professional or medical personnel interested in amputees” like our health insurance policies.  Oh sure, the prosthetic houses like to show up every once in a while and distribute their business cards and get their names in the newsletter.  But, with the exception of Jason Bulger from Nascott Rehabilitation Services, ASGNVA has NO REGULAR ATTENDEES THAT ARE PROFESSIONALS IN THE MEDICAL, PROSTHETIC OR REHABILITATION FIELDS.  Maybe they aren’t really that interested. Ask them next time you’re in one of their offices spending your money.   

          Also, ASGNVA needs some mentors for novice amputees.  Please let Beth know if you want to be informed of novice amputees in your area so that you can offer peer support – even if you don’t attend meetings.  Thanks! – Beth Harris, ASGNVA newsletter editor.

News and Announcements

ASGNVA Funds and Donations – There have been NO donations to ASGNVA Fund 352 at the INOVA Health System Foundation. This fund is where ASGNVA gets the finances to publish and distribute our newsletter, distribute New Amputee Information Packets to new amputees and anything else that costs money that ASGNVA does (supplies cost only; labor is all volunteer). ASGNVA does not charge any dues so please consider a donation.

To obtain a donation form, call 703-289-2072.

To donate by check or money order:

Payable to Inova Foundation Fund 352,
Inova Health System Foundation, 8110 Gatehouse Road, Falls Church, VA 22042. 

To donate by credit card:
https://connect.inova.com/j/inovanet.srt/forms/donation/donatenow.htm.

Remember to indicate Inova Foundation Fund 352.

ASGNVA Newsletter Database Update –  Remember to update your personal information with the Amputee Support Group of Northern Virginia as soon as possible. Contact Beth Harris, 6316 Sumerduck Rd, Remington, VA 22734-2308, 540-439-3656, betheharris@earthlink.net or asgnva@earthlink.net. ASGNVA does NOT share your personal information AT ALL without your explicit permission and only the Database Administrator has access to all of your information. Failure to update your personal information may result in being dropped from the newsletter distribution list. Here’s the information requested: 

• Name and Street Address, City, State, Zip.
• Phone (home, work, fax, cell, whatever you have).
• E-mail address (if applicable).
• If you have a “significant other”, their name. 

Additionally, to help me target subject matter and for statistical purposes, please include the following:

• Your birth date.
• Your association to ASGNVA (amputee, family member, friend, or type of professional).
• If you are an amputee:

• What type of amputation (right above knee, or bilateral below knee, etc.).
• The year(s) of your amputation.
• The cause of your amputation.
• If you use a prosthesis or not.
• If you use a prosthesis, who your prosthetist is.

So far, I have received one (1) update (Thanks, Stan).  It’s going to be a pretty short newsletter distribution list!  Thank you for your cooperation.  

Accessible Evacuation Procedures Required: A Landmark Case - On May 4, 2005, attorneys from Hogan & Hartson L.L.P. and the Washington Lawyers' Committee for Civil Rights & Urban Affairs announced the settlement of a high-profile, ground-breaking lawsuit against Marshalls, requiring the major discount retailer to provide accessible evacuation routes for shoppers with disabilities in all of its stores nationwide. In 2002, the plaintiff in this case, wheelchair-user Katie Savage, was trapped inside a basement-level Marshalls store in Silver Spring, MD for over an hour after an evacuation alarm sounded.

          Commenting on this lawsuit, former EPI Director Elizabeth Davis said she is encouraged by the result: "The outcome of one person's willingness to push for a system-wide change based on her own experience will lead not only to a better awareness of emergency issues for people with disabilities, but also improved safety for all people," said Davis.

          According to the National Council on Disability(NCD), emergency plans often overlook people with disabilities, increasing the risk that when a disaster occurs, they will be left behind or without information that could save their lives. NCD released its report, Saving Lives: Including People with Disabilities in Emergency Planning, at a news conference on April 15, 2005, at the National Press Club in Washington, DC.

 

 

Services and Products

Missing Out on Benefits? - BenefitsCheckUp is a service of the National Council On The Aging which helps to find programs for people ages 55 and over that may pay for some of their costs of prescription drugs, health care, utilities, and other essential items or services.

          BenefitsCheckUp is the nation's most comprehensive online service (https://ssl1.benefitscheckup.org/) to screen for federal, state and some local private and public benefits for older adults (ages 55 and over). It contains over 1,300 different programs from all fifty states (including the District of Columbia). On the average there are 50 to 70 programs available to individuals per state.         

          In addition to identifying the programs that a person may be eligible to receive, BenefitsCheckUp also provides a detailed description of the programs, local contacts for additional information (typically,  the addresses and phone numbers of where to apply for the programs), and materials to help successfully apply for each program.

          BenefitsCheckUp was developed to address a concerning problem: millions of older adults are eligible for benefits, but not receiving them. Ranging from health coverage to supplemental income to help in paying utility bills, there are millions of older adults who could benefit from a wide array of public programs if they knew about them and how to apply for them.

ASGNVA Web Pages – INOVA Fairfax Hospital’s official ASGNVA web page:

www.inova.org/inovapublic.srt/rehabilitation/amputee_support.htm.

The ASGNVA UNOFFICIAL WEB PAGE: 

home.earthlink.net/~asgnva/ASGNVA.html.

Newsletters and other information will continue to be added to the unofficial web page, as applicable. Let Beth Harris know at 540-439-3656 if you want anything added to the page, find something missing or wrong, etc. 

ASGNVA Lending Library – Come to a meeting and borrow a book or see what new handouts are available. If you would like to borrow materials from ASGNVA’s Lending Library, please contact Jason Bulger at 301-680-2159 or Beth Harris at 540-439-3656 or e-mail asgnva@earthlink.net.

Member Updates

Doug Sloan – Doug Sloan went to see Dr. Attinger on Thursday, May 19, 2005 and Dr. Attinger diagnosed a large infected mass on the side of his leg. Doug is our “mighty hunter” who was speared with a tree and managed to get away with only a below knee amputation, although it took him a long time to get there.  But, once he was there, he got right into the program, jumped up on a prosthesis and went on his merry way. And that was wonderful because Doug’s family had been to quite a few meetings so all of us were very invested in Doug and were extremely happy for him. And now this – I don’t have any more details except that Dr. Attinger felt that the surgery couldn’t wait and off Doug went; he has two more surgeries scheduled in June. I’m sure Kayla will e-mail me updates when she catches her breath. She did tell me that she and Doug feel assured and comfortable with Dr. Attinger, even though this is their first experience with him, since they “have heard such glowing comments about him through the ASGNVA newsletter and other ASGNVA amputees.”  OK Dr. Attinger, do your stuff, we’re counting on you.  And, Doug and Kayla, call or e-mail if you need anything – that’s what a support group is for – supporting!

Scheduled Events

ASGNVA Monthly Meeting – The next monthly meeting is July 5. Do you have a subject or topic you would like to see covered? If so, please contact Beth Harris at 540-439-3656 ASAP. Any and all suggestions are appreciated.

ACA Annual Educational Conference & Exposition – It’s not too late to make your reservations for the ACA 2005 Annual Educational Conference & Exposition, August 11-13, 2005, in Dallas, TX. The theme of the 2005 conference is Changing Direction: Leading the Way to Better Care and issues related to amputation, pain control, technology, fitness, gait training, and advocacy will be covered in 3 days of nonstop sessions, events and social activities. Learn how the ACA is working for you in Washington, DC as we launch the largest advocacy campaign in ACA history!

All conference events and activities will take place at the Fairmont Hotel in Dallas. The ACA has a room rate of $100/night plus taxes. To reserve your room, please call the Fairmont toll-free at 800/441-1414.

Calendar of Events

3	HAPPY BIRTHDAY TO ABDELGANI HAMID!
6	HAPPY BIRTHDAY TO ELIZABETH SEYMORE!
7	Amputee Support Group of Northern Virginia (ASGNVA) – First Tuesday of the month, 7:30-9:00 p.m., 2990 Telestar Court Building, Gemini Room, Falls Church, VA.  Contact Beth Harris, 540-439-3656, betheharris@earthlink.net or asgnva@earthlink.net.
11	HAPPY BIRTHDAY TO PAULA GOLLADAY!
14	FLAG DAY Fredericsksburg Area Amputee Support Team (FAAST) – Second Tuesday of the month, 7:00-9:00 p.m., The disAbility Resource Center, 409 Progress Street, Fredericksburg, VA.  Contact Greg Wright, 540-899-2655 or 800-333-4102. Winchester Amputee Support Group – Second Tuesday of the month, 5:30-6:30 p.m., Conference Room, Second floor, Winchester Rehabilitation Center, 333 W. Cork St, Winchester, VA.  Contact Christie Augustine, 540-536-5113.
15	Kernan Hospital Amputee Support Group – Third Wednesday of the month, 6:00-8:00 p.m., SCI Gym Room G604, Kernan Hospital, 2200 Kernan Dr., Gwynn Oak, MD.  Contact Mark Senker at 410-581-7027.
16	HAPPY BIRTHDAY TO BRENDA BLAKE!
19	FATHER’S DAY HAPPY BIRTHDAY TO CHUCK RATTMAN
20	HAPPY BIRTHDAY TO BUD ATCHISON!
21	Washington Amputee Association (WAA) – Third Tuesday of the month, 6:30-8:30 p.m., National Rehabilitation Hospital, 102 Irving Street, NW, Washington, DC, Ground Floor Dining Room (rear section, near the windows and behind the partition).  Contact Roy Dwyer, 301-897-2816.
26	HAPPY BIRTHDAY TO JACK MYERS!
30	Ability With Mobility – Last Thursday of the month, 6:00-8:00 p.m., 2nd floor, Adventist Rehabilitation Hospital of Maryland, 9909 Medical Center Dr., Rockville, MD.  Contact Sandy Shehadeh, 240-864-6200.
1	HAPPY BIRTHDAY TO DR. MISSY WOLFF-BURKE AND AYALEW ASSAYE!
3	HAPPY BIRTHDAY TO BILL SHAFFER!
5	Amputee Support Group of Northern Virginia (ASGNVA) – First Tuesday of the month, 7:30-9:00 p.m., 2990 Telestar Court Building, Gemini Room, Falls Church, VA.  Contact Beth Harris, 540-439-3656, betheharris@earthlink.net or asgnva@earthlink.net.   HAPPY BIRTHDAY TO REFUGIO VILLANUEVE AND ROBERTA WOODEN!
7	HAPPY BIRTHDAY TO STEPHEN McCARTHY!
10	HAPPY BIRTHDAY TO BETTY ROBERTS!
11	HAPPY BIRTHDAY TO LENNY McGARVEY!
12	Fredericsksburg Area Amputee Support Team (FAAST) – Second Tuesday of the month, 7:00-9:00 p.m., The disAbility Resource Center, 409 Progress Street, Fredericksburg, VA.  Contact Greg Wright, 540-899-2655 or 800-333-4102. Winchester Amputee Support Group – Second Tuesday of the month, 5:30-6:30 p.m., Conference Room, Second floor, Winchester Rehabilitation Center, 333 W. Cork St, Winchester, VA.  Contact Christie Augustine, 540-536-5113.
19	Washington Amputee Association (WAA) – Third Tuesday of the month, 6:30-8:30 p.m., National Rehabilitation Hospital, 102 Irving Street, NW, Washington, DC, Ground Floor Dining Room (rear section, near the windows and behind the partition).  Contact Roy Dwyer, 301-897-2816.   HAPPY BIRTHDAY TO FRANK RACKLEY AND KEITH BRIDGETT!
20	Kernan Hospital Amputee Support Group – Third Wednesday of the month, 6:00-8:00 p.m., SCI Gym Room G604, Kernan Hospital, 2200 Kernan Dr., Gwynn Oak, MD.  Contact Mark Senker at 410-581-7027.
22	HAPPY BIRTHDAY TO DEBBIE PEARCE AND HELEN WEINBERGER!
24	HAPPY BIRTHDAY TO PAT BAKER!
28	Ability With Mobility – Last Thursday of the month, 6:00-8:00 p.m., 2nd floor, Adventist Rehabilitation Hospital of Maryland, 9909 Medical Center Dr., Rockville, MD.  Contact Sandy Shehadeh, 240-864-6200.
29	HAPPY BIRTHDAY TO IRVIN AXELROD!

Mr. LeVene Goes to Washington

By Steven LeVene, AT Network Project Director

          During the final week of May, The Association of Tech Act Projects sponsored a series of educational meetings in Washington DC. The purpose of these meetings was to help inform concerned legislative staff on the usefulness and importance of the Tech Act in each state. The Tech Act is a federal law that provides funding to each state to provide information, education and direct advocacy for consumers with disabilities in need of assistive technology services. Though the legislature unanimously passed the reauthorization of this law last year, and the President signed it, the President’s budget has zeroed out all funding for it in the next year. Fortunately, the House and Senate must approve the President’s budget.

          The effectiveness of these programs is clear.

          Last year State Tech Act programs across the nation made 66,551 device loans to allow individuals to “try before they buy” and to meet other short-term needs. 9,500 devices were exchanged/recycled to new consumers, saving an estimated $7,794,575 compared to purchasing new AT. Almost $11 million in financial loans were made so that individuals could purchase AT. 151,628 information and referral calls were received from individuals with disabilities. 711,779 public awareness contacts were made.

          Several Tech Act programs were represented at these meetings, including representatives from Virginia, Louisiana, Ohio, Oklahoma, New Hampshire, The District of Columbia and California. The needs of consumers were highlighted as the primary concern, since many Tech Act projects will close their doors and stop providing all services if the Federal Budget is passed without funding the Tech Act.

          The meetings were well attended by the staff of many legislators. From the Senate there were 17 representatives and from the House there were 8. Of course, all Tech Act representatives will be contacting Federal Legislators in the coming weeks to continue to help in informing everyone concerned about the effectiveness of these programs and the real need for their continued support. It is in the hands of the legislature now to see the value of these programs and authorize funding for the coming years. We are fortunate to have a system of government that does not hinge on the opinions of one individual, and I am sure our elected representatives will see the value of what is provided under the Tech Act in each state.

          In April, a letter of support was circulated among the members of the House of Representatives. Only forty members have signed it, agreeing to support these important programs. That leaves 395 representatives who have yet to commit themselves to the needs of people with disabilities. If you would like your opinion heard in this matter, you may contact your local Congressperson or Senator by visiting the following:

http://www.house.gov/

http://www.senate.gov/

Embracing ADA Pays Off

Bridging the gap between ADA compliance and business objectives

          It’s good policy and good business to make the doors in your building accessible to people with disabilities. These individuals are a significant segment of the population, with $175 billion per year in discretionary income. A business can tap this lucrative market by investing in accessibility. One major area that is easy to upgrade is the hardware on entrances and interior doors.

          Despite the Americans with Disabilities Act (ADA), many building owners still have not done enough to make their doors and door hardware ADA compliant.  “Businesses have had 13 years to meet the ADA’s requirements. There’s no longer an excuse for violations,” says Alan Reith, president, National Organization on Disability (NOD), Washington, D.C.

          If compliance seems costly, non-compliance can be even more expensive. The rising cost of lawsuits is coupled with civil penalties by the U.S. Department of Justice – up to $55,000 for the first violation, and $110,000 for subsequent violations. Building value can also be affected if there are accessibility issues to be dealt with. Yet many changes are easy to make, such as replacing doorknobs with lever trim or adding a power door operator.

          ADA accessibility does not simply accommodate those with disabilities, but also serves everyone that uses a facility. In addition to serving the 54 million Americans with disabilities, a building with more accommodating doors and hardware is convenient for the elderly, children, and people carrying heavy loads or pushing strollers. It’s a business advantage to create an environment that accommodates all ages and people. Providing accommodations can create a positive corporate image and deliver a favorable message about your company as well.

          Many companies are now realizing the benefits of ADA compliance. An average of 19.3 percent of the population has at least one disability, according to the U.S. Census 2000.  The few extra dollars it costs per square foot to accommodate people with disabilities are worth spending because of the multiplier effect, particularly in occupancies like restaurants and entertainment venues where people go in groups. 

          ADA compliance does not have to be an expensive burden, but rather an investment that can provide real financial returns. Unfortunately, the corporate mindset is often that facility expenses should be tightly controlled, minimized, or eliminated. Companies are not accustomed to recognizing that some facility expenses can actually generate new revenue. Although the payoff could be long term and not readily visible, ADA compliance is a benefit to a company, its customers, and the general population. 

          Improving the accessibility of your facility is not only the right thing to do; it also makes good fiscal sense. Help is available, with an increasing number of companies available to conduct a complete assessment of ADA accessibility compliance. “You want a consultant with a pragmatic view of ADA compliance who is also able to leverage other business objectives,” says Mark Derry, president, Eastlake Derry & Associates, Morgantown, WV.  Eastlake Derry & Associates is an accessibility and ADA consulting and training services company.  Consulting companies will also provide solutions to related facility, security, safety, productivity, convenience, and other strategic organizational goals.

Choices

Bonnie St. John

          I was in Montreal working out in the gym of a hotel and found my self side by side with a woman who lived 30 blocks from me in NYC!

          We began talking and she said, "Wow! You have faced so many obstacles! It seems like people who have more obstacles are made stronger by them."

          I had a bit of a reaction to this. It wasn't her necessarily, but a theme I have heard elsewhere. Over the years, many people have said to me, "If only I had had more challenges I would be a better person, like you. I had an easy life, with all the advantages. I didn't amount to much."

          Okay, they may not have said it quite like that, but that is what they meant. 

          When I think about that, the reality is that many people with a lot of challenges are destroyed by them. Many people's lives are permanently warped by their alcoholic parents or abusive spouses. There is no guarantee that great challenge leads to great achievement. Nor is there any tested link between great advantage and poor performance. Some people are weakened by their privileges and others use them to rise higher. 

          The bottom line is that we all have choices. We get what we get, and it is up to each of us to find the strength to make something from what we got. I don't know which path is easier or harder--I just got what I got. I guess I resent the idea of anyone saying I had it easier because I had it hard. That is just dumb. 

          We all have it hard. Staying motivated, staying committed to being your best isn't easy for anyone. Make the choice.

Critics say decision leaves many "in cruel and unnecessary isolation"

May 6, 2005
Medicare has implemented new national coverage criteria for power wheelchairs, scooters and other mobility equipment. The new criteria, which are effective immediately, adopt a function-based determination of medical necessity, the Centers for Medicare & Medicaid Services (CMS) said.

          The new determination looks at the ability of the beneficiary to safely accomplish mobility-related activities of daily living, such as toileting, grooming, and eating, with and without the use of mobility equipment such as a wheelchair. The new standard addresses the full range of equipment from simple canes and walkers to sophisticated power wheelchairs.

          "The steps we are taking today are part of our efforts to ensure that seniors who need mobility help will get it promptly, and that we are paying appropriately for mobility assistive equipment," said CMS Administrator Mark B. McClellan, M.D., PhD.

          "The new functional criteria reflect current medical practice and mean that beneficiaries will have the freedom to live better, more mobile lives, without needing to fit into a rigid ‘bed or chair-confined’ standard."

          Critics disagreed. Robert M. Hayes, president of the Medicare Rights Center said the new policy "maintains an antiquated and illegal policy that will keep tens of thousands of Americans in cruel and unnecessary isolation."

          “Today’s national coverage decision maintains a long obsolete Administration policy that pays 80 percent of the cost of a power wheelchair for a person with Medicare who needs it to move from a bedroom to a kitchen, but not for a person who requires the wheelchair to leave home for medical care, shopping or even employment," Butler said. "The policy imprisons people in their homes and is based on an outdated reading of the Medicare law."

          The new coverage criteria are part of a larger three-pronged Modern Mobility Initiative announced in April 2004 focused on improving coverage, payment and quality of suppliers of power wheelchairs and other mobility aids. In addition to developing new coverage criteria, CMS has developed new billing codes that will take effect January 1, 2006, to reflect the variety of wheelchairs now on the market. CMS expects to issue new quality standards for suppliers in 2006.

          "This coverage policy ensures that a beneficiary’s functional status and individual circumstances are considered so that the most appropriate technology for each beneficiary’s personal needs is covered," said Barry Straube, M.D., CMS’s Acting Chief Medical Officer and Acting Director of the Office of Clinical Standards and Quality.

          CMS plans to issue additional guidance in the near future to help physicians and treating practitioners better understand the new coverage criteria and CMS’s expectations about proper documentation in the medical record.

          The new standards are expected to help root out fraud and abuse, the department said.

          Butler said the CMS decision shows it is time for the White House to intervene.

          “It is now the 21st century: changes in technology, medicine and law require coverage of equipment that allows people with disabilities to have a productive life outside the four walls of their homes," Butler said in a statement.

          “It is time for the White House to intervene. President George H.W. Bush championed the Americans with Disabilities Act (ADA). President George W. Bush has repeatedly said he too supports allowing maximum independence for people with disabilities."

Here's a new kind of identity theft to worry about: car cloning.

          More than a few new car owners are running into trouble when they try to register their new cars. More than one unsuspecting buyer has gone to their motor vehicle department to discover that another car with the same identification number is already registered.

          That means one of the two is a fraud.

          Thieves are stealing identification numbers of luxury cars and sport-utility vehicles and using them on stolen automobiles so they can't be easily traced.

          The practice is called car cloning.

          With car cloning, thieves use vehicle identification numbers, or VINs, of parked cars and put them on a vehicle of the same model that has been stolen in another state or country. Thieves get documents that make the stolen vehicle seem legitimate. Cars are then sold to buyers who are unaware of the fraud until they try to register the vehicles and learn there's a duplicate.

          Stolen vehicles with legitimate IDs are easier to register at motor vehicle departments and aren't detected until an insurance company, the insurance crime bureau or the police discover that there are two or more vehicles with the same VIN registered to people in different places.

          In March, Florida Attorney General Charlie Crist announced arrests in a two-year investigation, dubbed Operation Road Runner, which uncovered a car theft ring allegedly responsible for stealing VINs from more than 250 cars.

          Often cloning is not immediately caught because of a lack of communication between states. For instance, people in New York might not know what's happening in California. 

  Just put an index card in your dashboard, covering the VIN number, to prevent your car from becoming a victim of car cloning!

 

7:30-9:00 p.m., JULY 5 MEETING

 

CELEBRATE YOUR INDEPENDENCE

 

COME TO A SUPPORT GROUP MEETING!

 

Contact Beth Harris, 540-439-3656, BeTheHarris@earthlink.net,

or ASGNVA@earthlink.net