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************************************ MEETING NOTICE
Sunday, March 21st, 2004 -- Speaker:- Dr. Armand Zilioli, formerly of
Winter Park, will answer any questions you may have
regarding Post-Polio Syndrome. Dr. Zilioli knows about
our problems as he is one of us.
May 16th, 2004 --
September 19th, 2004 --
November 21st, 2004 --
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CONTENTS
From Barbara
Gabapentin aka Neurontin
Cues for Postural Rebalancing
In Sitting
Thoughts
10 Steps to Care
I Wish For You
National Odd Shoe Exchange
Toll Free Hotline for Air
Travelers with Disabilities
Medicare Rate Changes for 2004
Taking Charge of Your Health
Review – Postpolio Syndrome
Believing in Yourself
Dues
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FROM BARBARA
One day a couple of weeks ago, I got up very early and started channel surfing – found a movie on LMC entitled “A Simple Victory”, starring John Larroquette, in which he had to do 50 hours of community service. The judge assigned him to coach a basketball team not telling him anything else. When he arrived to meet the team, he found that they were all disabled adults (mostly developmentally challenged), and he walked out. After a night in jail, he went back and started meeting the “team”. One young man walked around wielding a Canadian crutch --- yes, wielding, not really using it as it’s intended to be used. John told him to “put it down” so they could start practicing and the young man replied with “How will they know I’m disabled?”… This brought me back to two incidents of my own…..
The first involves when my brother brought my sister-in-law to meet the family. He told her that his sister had had polio and had a slight limp – after dinner when he was taking her home, she told him that his sister didn’t have a “slight limp”, she really limped. Of course, being my younger brother and having grown up with my limp, to him it was nothing with nothing.
The second incident – happened when they finally came out with the handicapped parking permits and I got one. I found that when I got out of the car I managed to exaggerate my limp so that people could see that I really, really needed the permit.
What I think I’m trying to say is that we sometimes think that unless we exaggerate our disabilities, the able-bodied community won’t realize that we are – now, how silly is that. I realize that there are some disabilities that aren’t obvious (i.e., the profoundly deaf), but those that are obvious, let’s not go out of our way to call attention to them.
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Well, guess it’s time to tell you about the 4-day cruise a friend of mine and I took on the Royal Caribbean Sovereign of the Seas ship last month. We left on February 16th from my home and drove down to Pt Canaveral (a little over an hour). Dropped off our luggage and went to park the car – they had ample handicapped parking so we had no problem there. We got onto the ship at about 11:30 am – went to our cabin, put away our things and went up on deck to take in the sun. THAT WAS THE LAST DAY THERE WAS SUN ON THAT PARTICULAR CRUISE!!! Yes, the weather was horrible for the entire cruise. Between the rain and the wind the tenders could not get anyone into CocoCay, Royal Carib’s private island. So, the Captain decided to head to Nassau, Bahamas, a day early. We arrived there Wednesday morning to winds of 35 knots and waves of 8 – 10 ft. All water activities were cancelled – however, I had gotten tickets to go on an excursion around Nassau and the Ardastra Gardens, only to find that the jitney buses used would not accommodate my scooter. We inquired on the ship about borrowing a manual wheelchair to take off the ship so we could do the excursion, only to be told that “No wheelchairs are allowed to be taken off the ship”. After speaking with the Purser, who said he would check further but was unable to do anything, we received a refund.
I did get off the ship with the scooter – the gangway was very interesting – up a steep sloop to the middle of the gangway and then doowwnn that steep sloop (the ship’s security officers helped to make sure the scooter didn’t go down too fast) – returning, they had to actually push the scooter up that steep sloop as I couldn’t handle it myself (and I’m good at getting where I have to be). Anyway, once off the ship, we braved the wind and went to see how much of the town and shopping we could see. Needless to say, curb-cuts were practically non-existent and where there was a curb-cut on one street when you arrived at the other end of that street there was no curb-cut so we had to turn around and head back. Also, the majority of the shops had a step to get into the shop. The one or two that we were able to get into really were quite accessible, much to my surprise. Only good part about not being able to get into the shops was that I saved a lot of money….. Oh, almost forgot – NO TRAFFIC LIGHTS, crossing the streets was an adventure in itself.
There were good parts to the cruise. The handicapped cabin we had was fine – it was an inside cabin which I was not thrilled about, but it did meet the needs I had. The food was good, the service excellent, and meeting a lot of new people was most interesting. Outside of the problem with the wheelchair, whatever was asked of the crew was taken care of. 95% of the ship was completely accessible – the 5% that wasn’t, were parts that were not really necessary for me to go on.
I am more than ready to take another cruise – this time for at least 7 days…. 4 are not enough.
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The following article has been reprinted with the permission of Post-Polio Health International. Spring 2003, Vol. 19, No. 2
Gabapentin AKA Neurontin
Susan L. Perlman, MD, Associate Clinical Professor of Neurology,
UCLA Medical Center, Los Angeles, California (sperlman@ucla.edu)
Neurontin has been touted on the Internet as “the best medication for post-polio syndrome,” which is an overstatement, if not an erroneous one. Dr. Perlman examines the drug, aka gabapentin.
Gabapentin (brand name Neurontin) appears to be the “new Prozac.” It was on the 2001 list of the top 50 prescription medications dispensed in pharmacies. Since its release in 1993 for the treatment of partial seizures in children and adults with epilepsy, gabapentin has also been studied for use in many different causes of pain (reflex sympathetic dystrophy, diabetic neuropathy, neuropathy from chemo-therapy, Guillain-Barré syndrome, restless legs, and other neuropathic pain, muscle, and joint pain). Smaller studies have been done for migraines, tremors, certain muscle disorders (stiff-person syndrome), certain eye movement problems (nystagmus), manic-depressive illness (bipolar disorder), schizophrenia, substance abuse, and even for sleep maintenance problems, and perimenopausal hot flashes.
A search of the medical literature yields over 1,000 references to its uses in therapy, although the FDA has so far approved it only for epileptic seizures and, in May 2002, for post-herpetic neuralgia (shingles). A recent review of its use in neuropathic pain suggests it can be started and increased over a week or so to effective doses in the 1,800-3,600 mg per day range (lower in people with kidney disease), with excellent reduction in pain and improvement in quality of life, mood, and sleep.1
This breadth of use of gabapentin is due in part to its mechanism of action. Calcium channels (“voltage-gated”) are important in nerve cell growth, nerve cell activity levels, and nerve cell death and have been found to be altered in animal models of neuropathic pain.2 Gabapentin seems to help correct this.
Because of the involvement of these channels in the health of nerve cells, gabapentin was also tested for its ability to protect nerves in animals3 and in people with Lou Gehrig’s disease,4 but was not found to be helpful.
The popularity that gabapentin has attained certainly relates to its broad effectiveness for various neurologic conditions, including pain, but also to its modest side effects. Adverse effects (commonly dizziness or imbalance, fatigue, and sleepiness) are usually mild to moderate, but occur soon after starting the drug, don’t appear to get worse at higher doses, and often go away after the first month. Gabapentin doesn’t interact with other medications (although it shouldn’t be taken at the same time as certain antacids, like Maalox), and only rarely causes allergic reactions.
Polio survivors, experiencing pain from nerve or muscle areas, restless legs, or disturbed sleep because of these factors, might be recommended to try gabapentin by their physician, as an “off-label” use supported by the various studies reported in the medical literature. However, the common side effects of fatigue or imbalance might not be well tolerated by a post-polio person who already has problems with low day-time energy levels and declining mobility. Starting at lower doses and increasing more slowly over time might minimize these undesirable effects.
References
1. Backonja, M., & Glanzman, R.L. (2003). Gabapentin dosing for neuropathic pain: Evidence from randomized, placebo-controlled clinical trials. Clin Ther, 25(1), 81-104.
2. Luo, Z.D., Calcutt, N.A., Higuera, E.S., et al. (2002). Injury type-specific calcium channel alpha 2 delta-1 subunit up-regulation in rat neuropathic pain models correlates with antiallodynic effects of gabapentin. J Pharmacol Exp Ther, 303(3), 1199-1205.
3. Rekling, J.C. (2003). Neuroprotective effects of anticonvulsants in rat hippocampal slice cultures exposed to oxygen/glucose deprivation. Neurosci Lett, 335(3), 167-170.
4. Kalra, S., Cashman, N.R., Caramanos, Z., Genge A., & Arnold, D.L. (2003). Gabapentin therapy for amyotrophic lateral sclerosis: Lack of improvement in neuronal integrity shown by MR spectro-scopy. AJNR Am J Neuro-radiol, 24(3), 476-480
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The following article was distributed at one of our meetings by the Thomas Orthopedic and Sports Physical Therapy speaker. We felt it was important enough to include in our newsletter. Barbara
CUES FOR POSTURAL
REBALANCING IN
SITTING
In the sitting position it is very difficult to hold yourself upright without fatiguing. We recommend using pillows and props to support your body in optimally aligned positions and to change positions often.
1. PELVIS:- Roll your pelvis forward and backward, arching and rounding your low back. Stop in the arched position with pelvis rolled forward slightly. This position allows the pelvis to provide a base of support for an erect spine. Notice when you roll your pelvis back, rounding your low back, your upper body collapses forward and contributes to poor postural alignment. Below are several options to support your pelvis with props. Weight should be through the “SIT bones” not the tail bone.
Seat Height: Raise seat high enough so that the feet rest on floor and the hips are even with or slightly higher than the level of the knees.
Seat Pan: If possible, tilt seat pan slightly downward in the front making knees lower than the hips, rolling the pelvis forward. If unable to tilt it downward or level, place a pillow or foam wedge in seat to create a forward tilt. Wedge a rolled towel in behind buttocks to prevent pelvis from “rolling backwards”, like a wedge behind a wheel.
2. FEET:- Place one foot forward of the other. Ideally some weight is on the legs. You may drop one foot under chair which will further tilt pelvis forward.
3. RIB CAGE / SHOULDERS:- Raise
sternum (breast bone). Bring your palms together in front of you and reach up overhead. Separate your palms turning your little fingers to the outside and bring your elbows and shoulder blades down and back. Drop your hands down to natural resting position.
4. HANDS:- Hands should be resting on keyboard with elbows at an 80 – 90% angle. Split keyboard is recommended for greater width between hands allowing for shoulder blades to remain down and back.
5. HEAD:- Keep your chin tucked in and imagine a helium balloon is attached to the crown of your head and is lifting you as tall as possible. Adjust the height and location of monitor so that it is eye level and straight in front of you. A telephone headset is recommended to prevent sidebending of neck while holding phone.
FECPPSG Editor’s Note:- These are basic positions that most of us can follow without any difficulty. With respect to the last suggestion – “telephone headset”, a speaker phone will also take care of this “sidebending of neck”.
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The following “thoughts” have been sent to me several times via the e-mail network. Thanks to all who sent it as it really is so…..
“THOUGHTS”
The most destructive habit..........................................Worry
The greatest Joy...........................................................Giving
The greatest loss..........................................................Loss of self-respect
The most satisfying work.............................................Helping others
The ugliest personality trait.........................................Selfishness
The most endangered species..................................Dedicated leaders
Our greatest natural resource....................................Our youth
The greatest "shot in the arm"………………………Encouragement
The greatest problem to overcome...........................Fear
The most effective sleeping pill…….........................Peace of mind
The most crippling failure disease...........................Excuses
The most powerful force in life..................................Love
The most dangerous pariah......................................A gossiper
The world's most incredible computer.....................The brain
The worst thing to be without.....................................Hope
The deadliest weapon...............................................The tongue
The two most power-filled words.............................."I Can"
The greatest asset.....................................................Faith
The most worthless emotion....................................Self-pity
The most beautiful attire...........................................SMILE!
The most prized possession....................................Integrity
The most powerful channel of communication……Prayer
The most contagious spirit.......................................Enthusiasm
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The following article was in the November 2003 Paraplegia News. I think it most appropriate for our newsletter as many of us may be reaching the point in our lifes where we are considering going into an Assisted Living Facility (ALF).
10 STEPS TO CARE
BY Fred Cowell
DEFINITIONS OF ASSISTED LIVING
Assisted Living (AL) has been defined by the Assisted Living Federation of America (ALFA), a trade organization of assisted-living providers, as “a special combination of individualized services that include housing, meals, healthcare, recreation, and personal assistance designed to respond to the individual needs of those who require help with ADLs and IADLs. These supportive services can be available for up to 24 hours a day to meet scheduled and unscheduled needs in a way that promotes maximum dignity and independence for each resident and often involves the resident’s family, neighbors, and friends.”
Assisted living consists of a variety of housing options and individual supportive services designed to meet the needs of people who require assistance with ADLs. Assisted-living residences can range from renovated homes serving 10 – 15 individuals to high-rise apartment complexes accommodating 100 people or more. Most residences, according to ALFA, have 25 – 120 units, varying in size from a single room to multiroom apartments.
A VIABLE ALTERNATIVE
The philosophy of assisted living emphasizes independence, dignity, and individual rights. Therefore, assisted living can be a viable alternative to nursing-home care for people with spinal-cord dysfunction (SCD) and others with severe disabilities who can no longer live at home. However, assisted living is not inexpensive, and PVA encourages individuals with disabilities to explore all their options before making such a major life change. Investigate all potential assisted-living providers for quality, and compare costs before you select your new home.
ALFA members subscribe to this ten-point philosophy of care:
· Offering cost-effective quality care that is personalized for individual needs.
· Fostering independence for each resident.
· Treating each resident with dignity and respect.
· Promoting the individuality of each resident.
· Allowing each resident a choice of care and lifestyle.
· Protecting each resident’s right to privacy.
· Nurturing the spirit of each resident.
· Involving family and friends, as appropriate, in care planning and implementation.
· Providing a safe, residential environment.
· Making the assisted-living residence a valuable community asset.
WHAT AND WHO?
There is no specific blueprint for an assisted-living residence. These facilities can be high-rise apartment buildings or large renovated homes. Resident living units can vary in size from one room to full-size apartments with private baths and kitchens. Other resident units may be shared by two people. Assisted-living facilities may be operated by nonprofit organizations or for-profit companies.
While a typical assisted-living resident is a woman in her eighties, other residents can be young or middle aged, affluent or low income, or have disabilities. Residents may need help with incontinence or mobility. Others may have Alzheimer’s disease or other memory disorders. Currently, an estimated more than 1 million Americans live in approximately 20,000 assisted-living residences.
10 STEPS to a GOOD SELECTION
1. Thinking Ahead:
The Value of Planning
Planning is essential to any successful endeavor. The ability to think and plan for the future can reduce some of the stress and confusion surrounding major life changes. Future life planning is something we all do. We plan for such things as education, marriage, first home purchase, next car, life insurance, our kids’ education, and in some cases our funeral. But most Americans fail to plan for their long-term-care needs as they grow older.
Time changes everything. Living independently with a severe disability is not an easy thing to manage even when you are young and healthy. It becomes more difficult as people with disabilities grow older and their health becomes more fragile. Tasks that were easy for us to do when we were younger become more stressful and difficult as we age. Everyday chores like meal preparation, laundry, and home maintenance can become burdens, and more assistance with personal ADLs may become necessary.
Therefore, it is important for people who are aging with disabilities to look ahead and think about various living situations that can make life easier and promote continued independence. Assisted living can be one of those options.
Planning ahead provides the opportunity to make a informed decision. Finding an assisted-living facility that has the right mix of services in a pleasant, comfortable atmosphere may take a little time. But, remember, this is your new home and it should meet as many of your needs and preferences as possible. Finally, advance planning gives you more control over the selection process, eases stress, and helps you make a good choice.
2. Determine Your Personal Needs
Think of assisted living as a service industry. What can it do for you – and at what cost?
Ask yourself basic questions about your personal needs and develop a written list of services you need help with, e.g., daily personal activities such as bathing, eating, and dressing. How often will you need assistance (once or twice a day, or several times a week)?
Meals furnished daily or just a few times a week? Assistance with medications? Laundry services? Transportation? Will you keep your car? How much living space do you want or need?
A comprehensive list of your personal needs will help you be more organized and will become a valuable tool when you begin the search for the right assisted-living provider. Your list will also be the foundation for cost information, because the cost of assisted living is based on the list of services you need and the size of the living space you require.
3. Information Gathering
Obviously, leaving your home is a major life decision that should include as much research as possible. Discuss this decision with your family; doctor; minister, priest, or rabbi; and friends. Contact local senior or disability organizations such as AARP chapters, senior centers, and independent living centers and ask about the reputations of local facilities. Do they know any residents of these places you may contact to ask questions? Call local government t offices for guidance, such as the Area Agencies on Aging or your local Office of Health and Human Services. Often the best information about competing assisted-living providers is from the Department of Veterans Affairs (VA) or private hospital social workers.
4. Understand the Costs
Costs for assisted living usually depend
Upon the size of the living unit and the scope of services the individual needs.
Most assisted-living providers charge month-to-month rates, but some require long-term commitments. Agreements between you and the provider are in legal contract form. There can be a lease contract for the living unit as well as a service contract that specifies the exact scope and cost for al services.
Generally, individuals pay for assisted living, but in some states a Medicaid waiver will cover low-income individuals under certain circumstances. In the near future, VA will pay for certain eligible veterans. Costs for assisted living vary according to individual need and ability to pay. In Montgomery County, MD, for example, prices range from $1,700 a month for a small group-home environment with limited services to $4,000 a month for a deluxe apartment with a sophisticated bundle of services such as personal assistance, medication assistance, laundry service, special meals, and housekeeping.
5. Compare Facilities
Visit as many facilities as possible. As questions of management, staff, and residents and make a thorough tour. Check the accessibility of individual living units and be sure the public areas meet your standards for accessibility, cleanliness, and style. Do residents and staff seem cheerful and happy?
During your discussions with facility management, inquire about things important to you such as costs, types of meals, services available, contracts, licensure, staff credentials, recreational programs, security, and transportation services. Are your questions answered in a clear, forthright manner?
You may want to make an unannounced visit to the facility to answer any lingering questions you may have. Inquire about staying overnight before you make a final selection decision, or plan to have a meal in the dining room to sample the food.
A major concern involves architectural and program accessibility. Review the entire facility to confirm it meets your needs. Also make sure transportation services and recreation programs are accessible. Obviously, the living unit must also meet your needs.
Ask about accreditation. This is provided by independent organizations that measure a facility’s performance to quality standards. Many states now require accreditation as a step to licensure, but some don’t. Has the facility you are interested in passed an accreditation survey? Some facilities do accreditation voluntarily even with no state requirement.
Don’t be unduly influenced by a fancy porch or large lobby. Remember, quality of service and a clean facility are most important. So, go ahead; shop around and compare individual facilities in your area. Remember, it’s your life and your money!!
6. Study and Understand
Contract Documents
During your visit, request a copy of the services agreements or lease contracts. Take these important documents home and read them carefully. Ask questions about any provisions you don’t understand. If some still are not clear, take the contract to a lawyer who specializes in this area. Your contract is a legal binding agreement for you and the facility.
Generally, two contracts make up the assisted-living agreement. One lists the services to be provided by the facility and the costs for those services. The second is for the living unit. Usually the cost varies according to the unit’s square-footage (size) and any special amenities you desire. Some facilities combine the services to be provided and the residence unit into a single contract document.
The importance of these contracts cannot be overstated. They obligate you and the provider.
7. Know Your Rights
and Responsibilities
Assisted living is not like a nursing home. You have a aright to come and go as you please and to receive guests and invite them into your home and stay over if you wish. Your living unit is your home, and you have a right to lock your door and feel your valuables are safe. You have a right to personal safety and to be free from intimidation or abuse.
Many of your rights are specified in the contract agreements mentioned in Step 6. However, it is important to understand your relocation rights if you decide to move or if the facility suggests things are not working out.
Sometimes people experience dramatic health problems that make relocation necessary. Know what happens if this occurs. Are you tied to a contract that requires continued payments even if you must move or enter a nursing home? How much departure notice is required?
Understand the facility’s mechanism to handle complaints. Is an appeals process available if a solution cannot be reached with a local manager or administrator? Also, may county governments now have an assisted-living ombudsman to help resolve problems. Other facilities have a resident committee that can file complaints and represent individual residents.
On the other side of the equation, you have certain responsibilities as well. You must make payments on time. You may also be required to maintain a certain level of cleanliness in your living unit and personal appearance. You may have responsibilities to be a good neighbor.
During the interview process, find out what you are required to do. Make sure you understand your responsibilities up-front before you sign a contract and move in!
8. Federal and State Regulations
These can be important to you because they outline the obligations of providers and in many cases determine who is eligible to live in an assisted-living facility.
Because the assisted-living industry is relatively new, sweeping federal regulations are nonexistent. However, the U.S. Senate Sub-committee on Aging has been conduct-ing extensive hearings on the industry and is considering development of a uniform set of federal regulations to govern it.
Currently, the primary regulating body of assisted living is state government. Each state has developed regulations – which vary from state to state – governing the operation of assisted-living facilities. In some cases, state regs are not friendly to people with disabilities. Some states have restrictions concerning issues such as incontinence, catheter use, and a person’s ability to self-evacuate in case of emergency. PVA is working to make these regulations more friendly, but much work remains.
Copies of state regulations are available from your state government or by requesting assistance from your congressional representative. If you believe you are being discriminated against PVA may help advise you of your rights.
9. Licensure
Each assisted-living facility must have a license to operate on local or state levels – or, in some cases, both. They are also required to ensure that all members of their personnel staff have current and proper licenses and credentials to perform their duties. It is good policy to ask questions about proper and current licenses during the facility review process. These licenses should be easily available upon request.
10. Final Selection
By now you have done your homework. Your research has narrowed your choices to a few providers, and you have a feel for which one you prefer. Hopefully, you feel comfortable with your choice. This has been your decision, and it was based on a careful review of your personal needs, your budget, and what the industry has to offer. So, trust your instincts and go ahead with your decision, whatever it is.
PVA believes positive life outcomes don’t just happen. They are a result of proper planning done well in advance of emergency situations that don’t allow the time we need to consider all of our options.
Remember, it’s your life, and you’re in charge!
SUMMARY
The battle to regain and maintain an independent lifestyle is one PVA members have fought since the date of their SCI/D. But as people with SCI/D grow older, their functional abilities often diminish, and the fight to maintain independence becomes more intense. While aging with SCI/D can threaten individual independence, thoughtful planning and the selection of a proper assisted-living environment can add years of independent living to a person’s life.
Assisted living is not inexpensive, and it’s not for everyone, even if you can afford it. But it is growing in popularity and can certainly provide a comfortable and pleasant alternative to more restrictive options.
Remember, effective planning is key to finding the assisted-living residence that is right for you.
Fred Cowell works in PVA’s Health Analysis Program at the organization’s National Office in Washington, D.C. If you have questions about assisted living, contact him at (800) 424-8200, ext 602 / fredc@pva.org. He will be happy to assist you. PVA hopes you have found this selection guide useful.
FECPPSG Editor’s Note:- Although this was written with veteran’s in mind, who have spinal cord injuries, if you substitute PPS for SCI you’ll find it fits our situation too.
Just to let those of you in Volusia and Flagler Counties here in Florida, Council on Aging in Daytona Beach has an “Aging Services Network” brochure which gives a lot of information on this topic.
Additionally, as I was part of the committee working on the “Aging Services Network” brochure, I have some information that was not included and will gladly share it with anyone who calls me (386-676-2435).
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"I wish for you..."
Comfort on
difficult days,
Smiles when sadness intrudes,
Rainbows to follow the clouds,
Laughter to kiss your lips,
Sunsets to warm
your heart,
Gentle hugs when spirits sag,
Friendships to brighten your being,
Beauty for your eyes to see,
Confidence for
when you doubt,
Faith so that you can believe,
Courage to know yourself,
Patience to accept the truth,
And love to complete your life.
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Reprinted from Post Polio Voice, Post Polio Support Group of Charlotte County, FL, Nov 2003
Established 1843
NATIONAL ODD SHOE EXCHANGE
A Non-Profit Organization
The History….
NATIONAL ODD SHOE EXCHANGE was founded in St Louis, Missouri in 1943. The late Ruth Rubin-Feldman created the organization as a support for polio survivors. Herself a survivor of polio, Ms. Feldman had feet of significantly different sizes. When wartime rationing made buying two sizes even more difficult, she conceived the idea of a service whereby people with similar problems could register their names and sizes. The registry served as a clearing-house that put people with similar interests and tastes, but opposite foot sizes, in touch with one another. Together the new friends could buy footwear and share the cost. No shoes were wasted and they saved money!
With many veterans coming home from the war as amputees, the service grew and broadened its scope. First Lady Eleanor Roosevelt gave NATIONAL ODD SHOE EXCHANGE nationwide recognition for providing such a valuable service.
Today, NATIONAL ODD SHOE EXCHANGE is no longer disease-specific, but assists people with a variety of conditions and life-styles. NATIONAL ODD SHOE EXCHANGE ships new, quality footwear to children, adults and senior across the United States and Canada from distribution center in Arizona.
NATIONAL ODD SHOE EXCHANGE is a 501(c)(3) non-profit organization that is a source of footwear for those requiring single shoes or pairs of differing sizes. Many have this need due to injury, disease or genetic disorders.
www.nationaloddshoeexchange.org
NOSE
P.O. Box 1120
Chandler, Arizona 85244-1120
(480) 892-3484
FECPPSG Editor’s Note:- Many of you, over the years, have asked about someplace to find shoes of different sizes. Well, here it is.
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Reprinted from Polio Epic, Southern Arizona Post-Polio Support Group, October-November, 2003
TOLL FREE HOTLINE
FOR AIR TRAVELERS
WITH DISABILITIES
The U.S. Department of Transportation is calling on all disability organizations to promote public education about its Toll Free Hotline for air travelers with disabilities through their organization newsletters, list-servers and sponsored events.
The Toll Free Hotline for disabled air travelers has been in operation since August, 2002 and is available for callers from 7 AM to 11 PM Eastern Time, seven days a week. It is currently not being fully utilized. The Hotline serves two main purposes: (1) education and (2) assistance in resolving disability-related air travel problems.
Many disabled air travelers are not aware of their rights and the Hotline, in part, exists as an educational service to inform air travelers with disabilities about their rights under the Air Carrier Access Act and the Department’s implementing regulations 14 CFR Part 382 (Part 382). Hotline operators are well versed in the ACAA and Part 382 and can provide callers with on the spot general information about the rights of air travelers with disabilities. The Hotline operators also respond to requests for printed con summer information about air travel rights of the disabled.
The Hotline can also assist air travelers with disabilities in resolving real time or upcoming issues with air carriers. The purpose of “real-time” assistance is to facilitate airline compliance with DOT’s rules by suggesting to the passenger and the airline involved alternative customer-service solutions to the problem. The airline remains responsible for deciding what action will be taken to resolve the issue in accordance with the ACAA and Part 382. Generally, if a caller has a real time problem or an upcoming issue with an air carrier, a Hotline Duty Officer will contact that air carrier and attempt to resolve the issue. For example, there have been a number of incidents in which Hotline Duty Officers have contacted air carriers and convinced them to accept service animals and electric wheelchairs on board flights, to stow folding wheelchairs in the cabin, and to provide requested wheelchair assistance.
Air travelers who want information about the rights of persons with disabilities in air travel or who experiences disability-related air travel service problems may call the Hotline to obtain assistance at: 1-800-778-4838 (voice) or 1-800-455-9889 (TTY)
Air travelers who want DOT to investigate a complaint about a disability-related issue still must submit their complaint in writing, via e-mail at: airconsumer@ost.dot.gov -
or postal mail to: Aviation Consumer Protection Division
U.S. Department of Transportation
400 7th Street, S.W.
Washington, DC 20590
To request flyers promoting the Hotline to distribute to your membership, contact (202) 366-1617 (voice) or (202) 336-0511 (TTY)
Source: APPA The Atlanta Post-Polio Association, July-September 2003 newsletter
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Reprinted from Elder Update, January/February 2004
MEDICARE RATE CHANGES FOR 2004
By Patty Shaffer, Program Specialist SHINE
(Serving Health Insurance Needs of Elders)
Department of Elder Affairs
Every year Medicare premiums and deductibles are updated in accordance with formulas regulated by law. The U.S. Department of Health and Human Services (HHS) recently announced changes to the out-of-pocket costs Medicare beneficiaries will pay starting in 2004. To help elders understand what this involves, the SHINE (Serving Health Insurance Needs of Elders) Program offers the following explanation of rate changes, available savings options, and information sources.
Both the Part A hospital deductible and the Part B premium are needed to cover the 25 percent of the estimated program costs for enrollees age 65 and older. General revenue tax dollars cover the other 75 percent of the costs.
“These premium changes underscore the need to improve and modernize the Medicare program,” HHS Secretary Tommy G. Thompson said. “We need a Medicare system that provides more choices for beneficiaries and more incentive for efficient, high-quality care. Choice and efficient care can help keep Medicare spending and Medicare premiums affordable as well as helping us preserve Medicare for future generations.”
MEDICARE PART A pays for inpatient hospital, skilled nursing facility, hospice, and some home health care. The new “deductible” for hospital care will be $876 per benefit period. This covers the first 60 days of a hospital stay. Co-insurance payment for days 61 through 90 will be $219, and for days 91 through 150, $438. You pay nothing for the first 20 days in a skilled nursing facility and $109.50 per day co-insurance fee for days 21-100. The Part A “premium” for individuals with fewer than 30 quarters of Medicare covered employment will pay $343 per month, and for 30 through 39 quarters a premium of $189 per month.
MEDICARE PART B helps pay for physician services, hospital outpatient care, durable medical equipment and other services including some home health care. The 2004 “premium” will be $66.60 per month. The “deductible” will continue to be $100 per year.