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CVC Senior Case Manager Lauren Ruiz explains open enrollment for health insurance, the different types of Medicare plans, and common health insurance terms.
Deadlines in health insurance are like your child’s first steps— you don’t want to miss them. One day could mean the difference between the effective date you want, enduring another month without insurance before your coverage starts, or losing the opportunity to enroll altogether.
Annual Open Enrollment Periods exist for almost all insurance types since the enactment of the Patient’s Rights and Affordable Care Act. Applications for Medicaid are still accepted all year long, but outside of that, some important dates to remember are:
It is possible during these enrollment periods to find good, comprehensive health coverage that doesn’t break the bank. It is also possible to make it through the entire insurance process with all of your hair still intact—you just need the right tools and preparation.
Most importantly, know your options. Try not to completely dismiss the idea of a specific policy type simply because you aren’t familiar with it. Everyone has different health needs, and what works for one person may not be the best coverage for someone else. The perfect example of this can be seen through the variety of Medicare plans available.
If you’re not familiar with Medicare, there are several different types of coverage a member can purchase – Original Medicare, a Medicare Supplemental Plan (Medigap), a Medicare Advantage Plan, and a Medicare Prescription Drug Plan.
Original Medicare is the coverage you automatically receive when you turn 65 years of age, or have been approved for Social Security Disability benefits for 29 months. Part A, hospital coverage, is provided at no cost to those who qualify and Part B, medical coverage, is available for a monthly premium. With Original Medicare, members typically pay 20 percent of the cost of most services, and prescription coverage is not included.
Medicare Supplemental Plans do exactly as their name indicates; they supplement the costs left behind by Medicare. The 20 percent member responsibility is covered completely by a Supplemental Plan. Certain plans—denoted by specific letters like Plan “F”—even cover additional costs like deductibles. These policies tend to have a higher monthly premium than other Medicare options, however, so while they offer comprehensive coverage, they may not be realistic or necessary for everyone.
Medicare Prescription Drug Plans, again, cover what their name suggests—prescription drugs. Typically, plans with great drug coverage are available at monthly costs under $50, and most plans follow a standard co-payment structure. If you have only Original Medicare, or Original Medicare and a Supplemental Plan, you will probably want to purchase a Prescription Plan as well.
Finally, a Medicare Advantage Plan covers hospital costs, medical costs, and prescription costs, all bundled together, under one policy. The “advantage” to these plans is that the hospital and medical coverage has an associated out-of-pocket maximum, meaning once that amount is met, the member will be covered at 100 percent for those services. Different kinds of Medicare Advantage plans are available—HMO, PPO, HMO-POS and more—and each has different rules to follow, so educating yourself about common insurance jargon can help make your insurance journey easier.
Understanding common insurance terminology will give you the ability to make the most informed decision and will allow you to consider your coverage from every angle, so you don’t miss any important benefits. Here are some terms every insurance policy holder should know:
• Summary of Benefits Coverage (SBC) – A document that details all the specific benefits and costs of a plan. It will detail what services are covered, what is not covered, and how much each will cost.
• Deductible – The amount the member pays before coverage kicks in. All costs are paid 100 percent out-of-pocket until the deductible amount has been met. Plans may have separate health deductibles and prescription drug deductibles.
• Co-payment – A flat amount the member is charged. Co-payments typically vary by service, so you may have one flat charge to visit your primary care physician, another to visit a specialist, and another to visit an emergency room.
• Co-insurance – The member is responsible for a percentage of the full cost of a service or medication. For example, a 20 percent co-insurance on a $400 lab test means the member will pay $80.
• Out-of-Pocket Maximum (OOPmax) – The most a member will pay in co-payments and co-insurances during the year, and then the plan will cover all charges at 100 percent. There may be certain charges that do not apply to the out-of-pocket maximum. If the plan also has a deductible, check to see if it is included in the out-of-pocket maximum amount.
• Benefit Maximum – A limit on the number of visits or total amount a plan will cover during the year or over the lifetime with the plan. Once the benefit maximum is met, the member will pay 100 percent of the costs for those services.
• Out-of-Network – Services received from a physician or medical facility that is not contracted with your plan. You will pay more for out-of-network services, or your plan may not cover any of the costs. Most out-of-network costs will also not apply toward the deductible or OOPmax.
• Prior Authorization (PA) – An approval from the insurance policy for a prescription drug before the plan will pay anything for the drug. Your prescribing doctor can submit a PA to the insurance company.
• Quantity Limit (QL) – The maximum amount of a prescription drug allowed within a 30-day period. If you are prescribed more than the maximum amount, the plan will not cover the costs for the additional medication, unless the prescribing doctor submits a request to increase the QL, and it is approved.
• Step Therapy (ST) – A restriction placed on a medication by the plan that requires the member to try alternate, cheaper options of a prescription drug before the plan will pay for it. If you have already tried the other drugs, and they didn’t work, or if you are on other medications that will negatively interact with the proposed alternatives, your prescribing doctor can submit a request to bypass the ST requirement.
• Not on Formulary – The plan does not cover the prescription drug and will not pay for it. Your prescribing physician can submit a Formulary Exemption request to the insurance. If it is approved, the plan will help pay for the medication.
• Explanation of Benefits (EOB) – A document the member receives from the insurance plan whenever a claim is submitted to the insurance company for payment. The EOB is not a bill, but it details how much the plan paid for a service and what the member’s cost will be. Always check the EOB to make sure you are being charged the right amount. Compare the SBC with the EOB if you are unsure, and call the insurance company if you have any questions.
• Health Maintenance Organization (HMO) – A type of insurance policy classified by its strict network of physicians and medical facilities. A member must stay In-Network to receive coverage and may have to get a referral to see a specialist doctor. Costs are usually lower in these policies, as long as your doctors are In-Network.
• Preferred Provider Organization (PPO) – A type of insurance policy with no restrictions on what doctor you can see or which medical facility you can go to. There is still an In-Network list which costs less to visit, but the plan will help pay for covered services, regardless of the doctor.
• Point-of-Service (POS) – A type of insurance policy that has a specific In-Network list, but will help pay for covered services submitted by any doctor, as long as that doctor will accept the rates charged by the insurance plan. If you want to visit a physician or medical facility not listed in the plan’s network, call the doctor and ask if they will accept the plan.
Knowing your options and educating yourself gives you the tools—now you just need to be prepared to begin the insurance process. Keep a record of all your important insurance documents, including Letters of Creditable Coverage, Notices of Plan Termination, EOB’s, and any additional grievances, requests, or appeals that may have been filed with an insurance company. These may be vital in securing a Special Enrollment Period that falls outside of the open enrollment periods first mentioned, or in disputing a charge with your previous or existing insurance plan.
Make a list of your insurance needs and what you can afford. If you receive Durable Medical Equipment (DME) for any reason, make sure you enroll in a plan that pays for DME. Include all the services and prescription drugs you know you need, as well as all additional expected services in your list. No one can predict the future, but talk to your doctors and ask if they foresee any specific upcoming procedures or prescriptions, so you can check the insurance plan for coverage of those as well.
If you are thinking about switching insurance plans during an open enrollment period, or are newly eligible for coverage, call Caring Voice for assistance. We can discuss your options and make sure you have the tools and preparation to find the best coverage for your needs.
Debora Camp was adopted and didn’t grow up knowing that Huntington’s disease was part of her genetic heritage. Her husband, Stephen Camp, describes how he and Debora deal with the illness that took them by surprise.
Deb and I grew up in the same church, so our memories of each other go back to childhood. We attended different high schools, but later attended the same college. I suppose we were opposites in many ways, Deb, the extrovert, and me, the shy one. We married in 1973 and have three children and five grandchildren.
Deb’s Huntington’s disease came as a complete surprise to us, since Deb was adopted. The diagnosis came in 2009 when her family doctor was concerned about odd movements Deb showed during a medical appointment. In retrospect, we can recognize other earlier symptoms, but that symptom is what resulted in a referral to a neurologist.
Deb and I have always found moments to laugh at our predicaments, and as strange as it may seem, we even found moments to laugh when we got the shocking news of her diagnosis. Deb’s adoptive mom had Parkinson’s, and while we waited for the neurologist’s diagnosis, she wondered whether that might be her fate as well.
When she got the Huntington’s diagnosis, she came home and said to me, “The good news is I don’t have Parkinson’s or Alzheimer’s. The bad news is, I have both.” Deb is a very independent and determined person. She insists that she will live as fully as possible for as long as she lives, and humor will always be part of living.
Our advice to anyone newly diagnosed would be to act as proactively as possible. A recent incident was shocking, but was the impetus to prepare for and prevent future similar incidents.
Deb was traveling with our daughter and three grandchildren recently when they stopped for a bathroom break at a donut shop. Deb accompanied the children to the restroom, while our daughter saw to other tasks.
Suddenly, three police cars pulled into the parking lot and blocked the exit. A policeman approached Deb. She was distributing juice boxes to the children as they fastened themselves into their backseat restraints. He began to question her and ordered her to get out of the car.
He then pulled her hands behind her back, presumably to handcuff her. My daughter ran around the car yelling, “She has Huntington’s.” The policeman stopped and apologized and asked if he could be helpful. Apparently, someone in the donut shop had thought Deb was drunk and called the police.
Deb explained to the grandchildren through her tears that the police thought she was sick. She went home and ordered a medical bracelet that indicates she has Huntington’s and she wears that whenever she leaves the house. We’ve also discussed Deb’s Huntington’s with our local police department. HDSA has a very helpful caregiver guide designed for police departments that can be found at the HDSA website. (See below.)
Deb and I both spent much of our careers as mental health counselors on college campuses. One might think that helps us deal more effectively with difficult circumstances in our lives. Well, Huntington’s has its surprises, and any day can bring a new challenge.
Deb didn’t grow up knowing that Huntington’s was a part of her genetic heritage. She never saw an older relative and her family cope with it as a fact of life. Every difficulty is new to us.
We are now strategizing to make sure Deb has regular check-ins from friends or potential caregivers, since I am often away from home. Deb and I are both concerned about the potential for a fall, and we’re evaluating our home for ways to reduce the risk. We are working with Deb’s doctor to be sure she is getting the right medication to help manage her mood, sleep, and energy.
We live in a rural setting and have always been hobby farmers. The usual routines of a hobby farm are now much more difficult, but we manage with the help of neighbors.
Deb is retired, but I continue to work in higher education. I am a dean in Student Affairs at a community college. I love my work, but can never stop worrying about Deb and even our children and grandchildren who are at risk.
Spouses of persons with Huntington’s need to care for themselves too. Not long ago, I was diagnosed with Parsonage-Turner syndrome, an autoimmune disorder that is quite rare. In my case, it resulted in paralysis of my diaphragm.
Since I’m healthy otherwise, I was able to adjust easily by using the other torso muscles involved in breathing. I’m convinced, however, that my illness is partly a stress response to Deb’s illness. I’ve determined that loving Deb also requires that I care for myself and seek help when I need it.
Huntington’s disease is a challenge that researchers are taking on, and Deb expects to enter some medical trials this summer. My friends and brothers and sisters have been very supportive. These days, I am encouraging all of them to learn more about Huntington’s disease and to help in any way they can to work toward a cure.Posted in Diseases, Featured, Media Center, Uncategorized | Tagged Alzheimer's, autoimmune disorder, debora camp, Diagnosis, genetic, huntingtin, Huntington's Disease, neurologist, neurology, Parkinson's, parsonage-turner syndrome, stephen camp | Leave a comment August 21, 2014
Starting Tuesday, September 2, 2014, CVC will have new office hours, Monday–Friday, 9 a.m.–6 p.m. EST.Posted in About Us, Featured | Leave a comment August 18, 2014
I always wanted to work for a nonprofit doing event planning. My mom ran a daycare when my three older brothers and I were younger. We had the best childhood growing up. In the summers, my mom planned these elaborate, fun, themed events for all of the kids in our neighborhood. We would have “Backyard Circus Day,” “Summer Olympic Challenges,” and massive scavenger hunts on a weekly basis.
My mom now works for our county parks and recreation department, where she plans community and youth programs. Throughout high school and college, I found myself working with my mom on various youth events and summer camps and truly loved it.
I love working at CVC because I get to do fun things, not only for the patients, but also for the employees. I love to plan activities that get people excited and give them something to look forward to, like monthly events for CVC staff. I also make travel arrangements for our staff to attend many of the annual patient conferences and education days.
Speaking to patients at the conferences, I’ve learned that travel with chronic conditions can be stressful. For them, making travel arrangements is a bit more involved than for most people. They have to let the airline know in advance if they’re traveling with a POC or a CPAP machine and make sure it’s FAA-approved. Each airline has a different procedure.
Some of our patients need wheelchair assistance in the airports, accessible hotel rooms, and hotel rooms with refrigerators for their medication. Narcolepsy patients with cataplexy need to have tubs so they don’t fall in the shower and hit their heads. Many of our patients have to take their medication, eat, and sleep at certain times when they’re traveling. Some have to have infusions on a weekly basis and plan their travel around that. Patients have to have prescriptions for their machines and medications on them at all times when they travel.
The relationships they form at patient education days and annual conferences can be even more beneficial than a typical vacation. They meet people with rare and chronic diseases who are exactly like them. It can be very comforting. When they’re first diagnosed, it can be very scary. They often tell me that their doctors don’t know anything about the disease. Going to education days and conferences can be quite meaningful to them.
What I think is most important for the newly diagnosed to know, is that, when they call here, they’re not going to be sent to a typical call center. Everyone here at CVC genuinely cares about what our patients are going through and will do their absolute best to help them.
CVC receives so many thank-you notes on a daily basis. Our patients take the time to pick the cards and write heartfelt thank-you notes. Reading them, you truly understand how much of a difference we have made with their quality of life, and that is very powerful.Posted in Diseases, Featured, Media Center | Tagged Caring Voice, Caring Voice Coalition, CVC, cvc closeup, events, events coordinator, nicole paulsen, non-profit, nonprofit | Leave a comment August 11, 2014
CVC Patient Advocate Stephanie Posuniak explains the rights of travelers with special needs, both in the U.S. and abroad.
Research suggests that the act of planning and anticipating a vacation boosts happiness, and that a very relaxed vacation boosts mood upon return. If you’re planning a vacation, this article will help you prepare for your journey and understand the laws that protect you and help make travel barrier-free.
The Air Carrier Access Act (ACAA) prohibits air carriers flying to and from the U.S., its territories, possessions, and commonwealths from discriminating against passengers on the basis of physical or mental disability. The Department of Transportation (DOT) has issued a rule providing standards of service which air carriers are expected to provide disabled individuals.
The DOT also provides a toll-free hotline to provide consumers with general information about the rights of air travelers with disabilities, respond to requests for printed consumer information, and help air travelers with time-sensitive disability-related issues. The hotline’s hours are 9 a.m. to 5 p.m. EST, Monday through Friday, except federal holidays. Call 1-800-778-4838 (voice) or 1-800-455-9880 (TTY) for assistance.
Requesting information from your airline prior to flight is also a great idea; for example, how will passengers embark, what storage facilities will be available, and what type of lavatory will be on the plane? The Americans with Disabilities Act (ADA) requires that carriers provide this information.
Generally, you’re not required to give advance notice to the air carrier that you have a disability; however, it may be a good idea to do this so the attendants will be ready to assist. There are some situations in which you must give advance notice to the air carrier. For example, when using your FAA-approved oxygen concentrator in-flight, you may need to present a statement from your physician confirming that you can safely undertake the flight.
If you elect to have an attendant on board, remember that the attendant is there for emergency evacuations and is not there for personal services like assisting with eating or accessing the lavatory. The carrier cannot impose a charge for the transportation of a requisite safety assistant.
Cruise Lines and Railways
Domestic cruise lines must also comply with the ADA by taking steps to accommodate passengers with disabilities. Under the ADA, a cruise line must not:
The ADA also applies to domestic passenger railways. Under the ADA, railcars must contain:
Sleeping compartments on railways must allow a person using a wheelchair or mobility aid to enter and maneuver within the compartment.
You don’t need to provide certification for your service animal in the airport as long as you provide “credible verbal assurances” that the animal is a service animal. With that in mind, bring documentation just in case.
The ADA defines “service animals” as those that work or complete a task “directly related to the person’s disability.” Thus, if the animal is solely for comfort or emotional support unrelated to a disability, the animal does not qualify as a “service animal” under the ADA.
When going through airport security, let the security officer know that the animal is a service animal, which means the officer cannot separate you two. While going through the metal detector, you may choose to have your animal go before or alongside you, whichever is better. The officer is trained in how to conduct searches of individuals with service animals and is subject to specific rules. The rules state that the officer cannot intentionally touch your animal without your permission. But you have a duty to assist with the inspection by controlling the animal. You may keep your service animal with you in-flight.
If traveling within the United States, the ADA applies to hotels, motels, inns, and other places of lodging built later than January 26, 1993. The ADA requires these structures accommodate individuals with disabilities and includes detailed design requirements. Dwellings subject to the ADA must also provide van-accessible parking spaces depending on the total number of rooms. There must also be at least one accessible route for those using a wheelchair or other assistive devices to approach and enter the building. Depending on the number of rooms, the hotel must also provide roll-in showers.
Will your health insurance cover you while traveling? If traveling within the United States, regular Medicare rules apply for Part A and B coverage (“original Medicare”). If you have a different type of health insurance than Medicare, check your policy for what’s covered.
If you have an Advantage Plan, the rules differ depending on how long you travel outside the plan’s service area. If you travel outside the plan’s service area continuously for more than six months, most plans will automatically dis-enroll you and enroll you in Original Medicare, if, in the meantime, you do not choose another Advantage Plan. If outside the service area for less than six months, whether the plan will cover you depends on the type of plan you have (PPO vs HMO). Generally, HMOs do not cover services from providers outside the plan’s network.
For Part D, check with your plan, the pharmacy, or call 1-800-MEDICARE for information on whether your preferred pharmacy is on your Part D Plan’s preferred list. The same applies for Medigap policies: see your Medigap policy for more information.
Under the ACAA, both domestic and foreign carriers flying to or from the U.S. must:
Cruise Lines and Railways
Cruise ships that dock at U.S. ports must comply with the ADA, and the U.S. ports must also be ADA-compliant. For new port facilities, the operator must ensure that individuals with disabilities, including those using a wheelchair, can use the facilities. Existing ports may have to remove architectural barriers, if possible, and if not, provide reasonable alternative accommodations.
European railways may not be wheelchair-accessible and are not subject to the same United States standards. Contact the local embassy to determine what services and accommodations they may extend.
Foreign carriers are not subject to the ADA and may only accept service dogs. Check with your destination’s embassy. You will also want to carry documentation showing that your animal is a service animal and not a pet. It’s also a good idea to learn the foreign country’s laws and regulations pertaining to leashing or muzzling and your liability if your service animal were to bite.
Traveling with a service animal also requires consideration of cultural and environmental issues. What are the country’s cultural customs regarding your animal? How will the public behave toward your animal? Prepare your service animal by exposing him to the climate, crowds or environment he will experience.
Also be mindful of your animal’s health. What changes in diet, grooming, and personal care will the animal experience? Determine whether the drinking water will be safe and to what parasites or viruses he may be exposed. You’ll also want to get his vaccinations up-to-date and carry a record of that.
Depending on your destination, you may need to make arrangements with the target hotel to assure accessibility.
The Medicare rules become more complex in the international arena. “Outside the United States” means anywhere other than the 50 states, District of Columbia, Puerto Rico, U.S. Virgin Islands, Guam, American Samoa, and the Northern Mariana Islands. Generally, Part A (which predominantly covers in-patient care and home health services) does not cover you while overseas, except in limited situations. For example, if you experience a medical emergency and the foreign hospital is closer than the nearest U.S. hospital, Part A may cover you.
Part B (which covers services such as out-patient doctor visits) does not extend overseas unless in specific situations. For example, Part B may cover medically-necessary services on board a ship within the territorial waters adjoining the land areas of the United States if the ship is six hours or less in distance away from a U.S. port.
If you have a Part D Plan, remember that drugs are not covered if bought outside the United States. If you have a Medicare Advantage or Medigap Plan, check with your plan to see whether you are covered abroad. If you find that you are uninsured or underinsured overseas, you can buy a supplemental health insurance policy specifically for traveling.
When bringing medications into a different country, be familiar with the country’s laws on what drugs are legal and what documentation is required. If unsure, contact the embassy.
I hope you notice the mood-boosting effects when planning your next vacation! If you start to feel overwhelmed, remember, as the Chinese philosopher Lao-tzu said, “A journey of a thousand miles begins from beneath your feet.”Posted in Diseases, Featured, Media Center | Tagged acaa, accessibility, accessible, ada, air carrier access act, airport security, americans with disabilities act, barrier-free, cruise line, department of transportation, disabilities, Disability, dot, health insurance, Healthcare, hotel, in-flight, inn, lodging, Medicare, Medication, motel, oxygen, passenger railway, prescription, service animal, special needs, Travel, traveler, traveling, vacation, wheelchair accessible | Leave a comment August 3, 2014
48-year-old Mari Jackson had worked since the age of 12. But last year, a diagnosis of pulmonary arterial hypertension forced her to slow down and approach life differently.
I got diagnosed with pulmonary hypertension last March. The symptoms started in February of last year, right around my husband’s birthday. It was like something out of the blue.
We had gone to dinner to celebrate his birthday and came home, and I said, “I’m going to get ready for work.”
I went upstairs to take a shower, and when I got off the bed to walk towards the bathroom, I just blacked out. When I woke up, I was on the floor, and I was face down by the sink.
I called my husband, and he and my son came running up the stairs, and my husband said, “What are you doing on the floor?”
I said, “I have no idea. I just blacked out.” My body had just shut down. I was so embarrassed.
But I didn’t pay it any attention. I worked for a mortgage company. Believe it or not, Monday through Friday, I drove every day to work—44 miles round trip. I worked anywhere from 10 to 12 hours a day, and I worked weekends and overtime.
I had an episode every weekend. I would pass out. I actually had a seizure one night. My husband noticed that every time I would go upstairs, I would get really, really light-headed and either fall backwards or lose my balance.
So, one night he came upstairs with me and said, “Let me just help you into the room.” I was using the bathroom, and I was sliding off the seat. I had a seizure, and he was right there to catch me, and I bit my tongue, and it was so weird because I had never had that happen.
The first Saturday in March, I went to work. I got upset about something, and the whole left side of my arm turned ice cold. It was numb, and I kept shaking it. Then, I started sweating.
I told my manager, “I’m going home. I’m not going to be able to stay.” My manager said, “You don’t look well,” and he called my husband.
My husband came and got me and took me to the emergency room. My blood pressure was 280 over 190. They said, “You’re not going anywhere, so get comfortable.” I ended up having to be admitted. They ran some more tests, and I stayed there for a week.
They did a lung biopsy, and then a right heart catheter. They did a crash blood pressure drop on me, and they would give me blood pressure medication three times a day. I felt like somebody was coming in and beating me.
I said, “Why do I feel this way?” They said, “We have to get your blood pressure down.” I had no idea, because my pressure was always high.
Once I got all the test results back, I met with my pulmonologist. He told me I had pulmonary arterial hypertension, that basically, my heart and lungs are not friends right now. I had no idea that my life was going to change.
I was devastated. I wanted to go back to work. And I couldn’t. I couldn’t even go up the stairs in my house. I either stayed upstairs or downstairs. To walk from my kitchen to my bathroom, I was gassed out. If I got up too fast, I fell out. If I dropped my head too long to tie my shoe, I passed out.
I couldn’t understand it. I got mad. I questioned myself. I questioned God, and I know that wasn’t the right thing to do, but I didn’t know what else to do. I wanted answers. I prayed for understanding.
Then I just started learning. I got on the websites and started learning about PH. There were things I had to do differently. I was confined to my room for six weeks because I couldn’t go up and down the stairs. I had to sit on the stairs and go up backwards. I was a very independent person. Then to have to rely on someone to cook me breakfast, to get me water, I thought, ‘This is unreal.’
I had to reform my thinking. My doctor told me I had to lose weight. And I thought, ‘Well, how is that going to happen if I can’t exercise?’
So I had to learn how to cut back on carbs, sodium, and to fall in love with water. I was 325 pounds, and now I’m 260, and I feel much better than I did a year ago. My doctor actually told me last week, “Compared to how you were last year, you would have never known.”
It just happened. I have had asthma since I was a little girl, but I only had one flare up as an adult. PAH hides behind asthma, and then it explodes all of the sudden. People with asthma have to be very careful and have things checked out extensively. There were no gradual signs.
Every time I would go to the doctor, my blood pressure would be high, and they would ask, “Do you have high blood pressure in your family?” And I would say, “Yes.” And they would ask, “Well, how do you feel?” And I would say, “I feel fine.”
But passing out and having seizures, never had I experienced that before. I was going through my own thing.
I didn’t really want to talk to people, because I couldn’t talk. I was gassing out. The longer I talked, the worse it got. You could hear I was struggling to talk. Last year, I was in a wheelchair.
I was scared, because you read things on the internet about your life expectancy. Then you read about all the new medications that have been FDA-approved. You’re hoping and praying that one of those will work for you.
This year is like a complete turnaround. I have a lot to be thankful for. I’m able to walk distances at my own pace. I still use a wheelchair in big places. I don’t do the mall. I get anxiety around a lot of people, because I feel like, if something happens, I’m not going to be able to get out. I try not to go to a lot of places by myself, and if I go somewhere by myself, I let someone know where I am. I have a Life Alert.
When I walk, I do so at my own pace. If I get tired, I stop. I do all right. [Recently] I went to the doctor by myself. I walked in on my own. But I took my time.
I can’t work anymore—that was the biggest thing. My husband’s work is seasonal. Financially it’s very hard. So, I communicate a lot with other PAH patients. I’m on the website with them. I try to get other ideas from people about what they’re doing.
If I could do volunteer work, that would be good. It’s difficult, because I like working with people with disabilities. But I have to be real cautious about my surroundings. If I catch something, I can’t take anything over the counter.
I have two grown children; they’re 20 and 27. My husband has five. I have four grandchildren who live in Washington, D.C. Last year I couldn’t travel because I was sick. Maybe this year, if the weather and my health permit, we’ll take a little road trip to see them. My parents live in Seattle, but I can’t really visit them because of the altitude of a flight.
My youngest son was here for a year, and he was very helpful, but at the same time, he was a teenager, and I didn’t want him to be stuck in the house with me all summer. He ended up going back to California.
I’ve been working ever since I was 12. I don’t know what a hobby is. After I had kids, I went right back into the workplace.
I have a friend, and we’ll get together and have lunch once a month, and it’s nice. I do like to read. I like romance novels. I really got into talking with other people with PAH in my area. I want to look into a chapter here in Charlotte. Maybe I could do something with them.
My husband was and still is a very big part of my healing process. He always makes sure that my needs are taken care of, no matter what, even cooking dinner after working an eight-hour day. I really do appreciate my husband, and I thank God for him.
To the newly diagnosed, I would say, “It’s going to work out. Don’t get upset, because being upset starts a lot of things, like stress.” I still do that, but I really try not to.
Sometimes I think, ‘What if this gets turned off? What if I lose my house?’ I realized when I was doing that, it was making me worse.
I went through a point where I didn’t want to be bothered with anybody. I was mad. I thought, ‘Why can’t I work?’ I thought my life was done.
Now, I just take everything one day at a time. I don’t let anything bother me. I keep it moving. I want to be able to grab, absorb and use everything you give me to the best of my abilities.
I still call myself a newbie. To the newly diagnosed I would say, “Life still goes on. It’s just that you have to take it slow. It’s about you. Nobody else. That’s how it is.”Posted in Diseases, Featured, Uncategorized | Tagged Asthma, crash blood pressure drop, disease, heart, high blood pressure, light headed, lung, lung biopsy, mari jackson, pah, PH, pneumonia, pulmonary arterial hypertension, Pulmonary Hypertension, right heart catheter, seizure | 8 Comments July 30, 2014 Posted in Diseases, Featured, Media Center | Leave a comment July 28, 2014
A consultant to the CDC and a gastroenterologist specializing in gastroenterology and tropical medicine, Dr. Bradley A. Connor has been counseling travelers for more than 30 years. Community asked Dr. Connor for his tips on traveling with chronic illness.
What do you think is important for those with chronic illness to know about travel?
The ability of people with chronic illness to travel has probably never been better than it is now. The ease of travel has developed to the point where people are going to more and more exotic places because there are physicians and health professionals who specialize in health issues related to travel. Those with chronic disease can feel confident at least knowing what the risks are and taking steps to prevent them.
What are some general tips for those traveling with chronic illness?
• Before you embark on travel—it could be domestic travel, travel to Europe, or a more adventurous type of trip, like a safari in Africa, or travel to Asia—check with your doctor who takes care of your chronic disease and make sure it’s his or her opinion that you’re fit to travel and that your condition is in a stable place.
• If you’re traveling to an exotic destination, avail yourself of travel medicine specialists who know the specific health risks. In some cases, either your own physician or a travel medicine physician might find a physician at your destination to refer you to should your illness become active when you travel.
• Preplanning is absolutely necessary. Make sure that your medications are up to date, and that you have more than enough medication for the trip. If your trip is for two weeks, take four weeks’ worth of medication. We’ve had patients who were stuck in Europe in 2010 when the clouds of volcanic ash from Iceland delayed flights. Be a little bit over-prepared.
• Take your medication, in the original, labeled container, in your carry-on luggage, never in your checked bags.
• If you need to, consult with a travel medicine specialist if you’re going to a place with a destination-specific illness.
• Have an emergency plan in place. What happens if your illness becomes active? What are you going to do? That could be something as simple as an email to your doctor; it could be having a doctor then referred to you at the destination.
• Post-travel, is there anything likely that you’ve picked up on the trip that may impact your illness? What are your doctor’s assessments?
What should travelers with chronic illness know about health insurance?
Check whether you do have health coverage overseas. In many cases you don’t. It’s a good idea to investigate what types of policies you can obtain for your travel in case you need to access medical care.
Some might want to consider medical evacuation services. It’s not for every traveler, but sometimes it’s less expensive to contract with a company like Global Rescue or International SOS in the eventuality that you have to be evacuated back home, or somewhere you can get good medical care. The cost of a policy for a short trip is usually fairly reasonable.
Some medications that are legal here are illegal in other countries. Do these issues come up for travelers with chronic illness?
Those issues do come up. There are certain countries, where certain medications (in some instance, even non-prescription medications) are not permitted into the country. Now, having said that, I don’t know of any instance where a traveler with a prescription medication with a physician’s letter has been denied entrance to the country, or has had their medication confiscated.
In some countries, if you have a physician there who is prepared to give you the medication or prescribe it there, that’s another way around it. But that takes a lot of effort.
The other issue, which is very important, is that the world is plagued with counterfeit medications. Beware of counterfeit medications sold in other countries. If you see a drug that sells for $10,000 here selling somewhere else for $400, be careful. People should take more than enough medication and not plan on buying medication overseas.
What are some of the precautions those who are planning to go on cruises should take?
One thing they can do is to check out the medical backup at the various cruise lines. Everyone is interested in keeping passengers healthy. Some do a better job than others. There are a few cruise lines that have put a lot of effort into having excellent physicians onboard, and having excellent medical directors.
With the norovirus outbreaks that you see on cruise ships, it’s not that there’s a lapse of hygiene with the cruise lines, it’s just that you have a lot of people together, and people are coming onboard with illness. Take the usual, frequent precautions for hand hygiene, like washing with soap and hot water and using hand sanitizers, and make sure the medical back up is there. Do the research.
What are some considerations when traveling with oxygen?
• If you plan on flying, ask your doctor whether you can tolerate the reduced air pressure on a plane and if you’ll need an additional oxygen supply during the flight.
• Check with your airline well in advance of travel about regulations and methods for permitting supplemental oxygen, including the need to carry a prescription for your portable oxygen compressor, whether it’s an approved device, and whether the airline charges for providing supplemental oxygen.
• If you’re on supplemental oxygen, make sure you have an adequate supply and that you have extra batteries for your POC in your carry-on luggage.
• If you’re going to a destination with high altitude, it’s important to let your physician know. Discuss with your doctor what effects altitude might have on your illness and on the delivery of oxygen.
What would you say to those with chronic illness who want to travel, but are afraid?
With proper planning, some of the perceived restrictions of traveling don’t have to be. Use your doctor as a partner. Use specialists in travel medicine if need be. Have an escape plan in place if you get sick. Don’t leave anything to chance.
If you’re new to traveling with chronic illness, take an easy trip first. See that you can do it. Then, maybe for your next trip, you can be a little more adventurous.
Done the right way, with a lot of preplanning, you don’t have to fear travel. If you’re suffering with a chronic illness, travel can be very enlightening and it can be uplifting psychologically.Posted in Diseases, Featured, Media Center | Tagged bradley connor, cdc, Center for Disease Control, chronic disease, chronic illness, gastroenterology, health insurance, Healthcare, Travel, traveling, tropical medicine, weill medical college of cornell university | Leave a comment July 21, 2014
Let these delicious internationally-inspired gluten-free recipes from top chefs around the world whet your appetite for new dishes and destinations. Eva Leonard gets the details on restaurants serving up gluten-free goodness.
When Chef Chris Clime’s wife was diagnosed with the autoimmune disease lupus, she embarked on a strict gluten-free diet on the advice of her doctors. It was then that Clime began to notice a growing demand for gluten-free dishes at PassionFish, the Reston, Virginia, restaurant where he is executive chef.
“Maybe it was a coincidence, but more likely, my awareness was heightened by our personal situation,” says Clime. “The good news is that my wife’s condition is not life-threatening, and going gluten-free has been really good for her, as well as the rest of the family.”
Many dishes on PassionFish’s regular menu already meet gluten-free criteria, and Clime is happy to accommodate special requests. “It’s always been fun for me to create with new or different ingredients, so this trend is a challenge I don’t mind at all.
“Some of our most popular dishes are Asian-inspired, and since Asian cuisine is rice-based, wheat flour isn’t much of an issue. The red Thai curry lobster clay pot and the crispy Vietnamese crab and shrimp spring rolls are naturally gluten-free. So is the whole crispy flounder, which is prepared with cornstarch, rather than flour.”
Clime—a big fan of Latin flavors—notes that Latin cuisine is not very wheat flour-heavy, often using corn or cassava flour instead. He coats PassionFish’s New Orleans fried oysters and shrimp in corn flour and has adapted other menu items to eliminate gluten, including jumbo lump crab cakes, and blue crab and corn chowder, which he now makes with rice flour.
At home, Clime experiments with a range of flour alternatives—the Climes now eat pasta made with corn flour. Clime’s wife’s heritage is Indian, and the family also enjoys various Indian dishes with roti, a flatbread made with lentil flour.
Clime’s favorite flour alternative for coating chicken and veal for scaloppini is a chickpea/almond/amaranth flour combo available at Trader Joe’s. “The crust gets crispy like it’s been deep-fried, although it’s just sautéed. That’s a pretty cool discovery that I never would have made if I hadn’t been forced to expand my flour horizons.”
Ingredients Yield: Four crab cakes
Ingredients for the sweet corn chow-chow
Method to pick crabmeat
Fairmont Hotels & Resorts’ more than 60 properties around the globe include the Fairmont, Raffles, and Swissôtel brands. The hotel group’s Lifestyle Cuisine Plus menu caters to guests with specific diet-dependent conditions such as diabetes, heart disease and gluten-free, as well as dietary preferences including, macrobiotic, raw and vegan.
Fairmont chefs have been trained to prepare a wide range of special dietary and allergy-specific meals and use recipe analysis software to help customize entrees and menus to meet guests’ caloric and nutritional requirements. Using nutrient-rich ingredients, clean cooking methods and local food products, chefs create dishes that are wholesome, balanced and full of taste. Guests with food allergies and sensitivities are invited to speak with the chef to plan their food options during their stay.Diseases, Featured | Tagged blue crab, braised buffalo short ribs, chef, chocolate flan, corn chowder, diabetes, fairmont hotels, fairmont resorts, Gluten, gluten free, golden apple salad, heart disease, heirloom tomato apricot chutney, jumbo lump crab cakes, lupus, macrobiotic, no gluten, passion fish, passionfish, raw, recipe, recipes, sirloin steak with mango salsa, sweet corn chow chow, vegan | Leave a comment July 14, 2014
Let these delicious internationally-inspired gluten-free recipes from top chefs around the world whet your appetite for new dishes and destinations. Eva Leonard gets the details on restaurants serving up gluten-free goodness.
Tori Kramer, pastry chef for the Park Hyatt Washington, D.C.’s award-winning Blue Duck Tavern, describes the evolution of her gluten-free awakening.
“I worked in a pie shop, and I was around a lot of flour. When I was in the shop, I got sick, and had to wear a mask. A friend suggested I give up gluten, but there was no way I was going to leave the kitchen—baking is my passion. Now, I’m in a larger kitchen, where the ventilation is great, and we make gluten-free and vegan items.”
Among those delectables: a carrot apple muffin topped with pecan streusel that has no refined sugar, but derives its natural sweetness from apples, carrots and applesauce, a multi-textured, chewy cherry-chocolate-almond granola bar, and a rich, moist orange-glazed orange scone. Kramer’s gluten-free creations make the palate feel treated, rather than deprived.
“Once I found out I had celiac disease, I went to the store, and I was completely distraught. That’s when I made it my mission to create delicious, gluten-free food,” says Kramer.
“The first gluten-free thing I made was cookies, and that was really exciting. I made my grandmother’s bread recipe and had to play around with it. I spent an entire weekend baking nothing but bread.”
Kramer’s recipes have been designed with maximizing spurts of energy in mind: “You can make it in big batches and keep it in the freezer. It’s simple and still delicious. When I did make food for myself, I had so little energy.
“For me, the most important thing has been to remove the stigma of gluten-free food. I want to be able to make one meal that everybody can enjoy. We’re making huge progress in the world of gluten-free. We’re not such a tiny minority anymore.”
An enthusiastic response to Blue Duck Tavern’s gluten-free options, Kramer notes, has prompted the restaurant to expand its menu to include items like gluten-free waffles and pancakes and fueled her desire to cater to other dietary needs.
“Now that we’ve been receiving great feedback from the gluten-free menu items, it’s so important to open this up for those with other dietary restrictions.”
The biggest challenge Kramer says she has found is in trying different ingredients. “I’m still learning every single day. You have to take into account texture, feel, and taste. You have to keep trying and learn to make things in big batches when you find the time and energy.
“The most exciting thing for me is when I create a gluten-free menu—to be able to bring my knowledge here and share that with everyone else.“
New Orleans native and award-winning chef and owner of Arlington, Virginia’s Bayou Bakery, Coffee Bar & Eatery, David Guas was recently tapped to host the new competitive outdoor cooking challenge show, American Grilled, debuting this summer on the Travel Channel. Oprah Winfrey’s O Magazine named Guas one of the “Ten Best Pastry Chefs in the Country,” and his cookbook, DamGoodSweet—Desserts to Satisfy Your Sweet Tooth New Orleans Style was one of Food & Wine magazine‘s “Best New Dessert Cookbooks” in 2009. Bayou Bakery, Coffee Bar & Eatery began offering gluten-free items, including the chewy honey almond bars below, two years ago.
Stay tuned for Part 2 of our Gluten-Free World Tour, highlighting more gluten-free recipes from top chefs!Posted in Diseases, Featured | Tagged bayou bakery, bayou coffe bar, bayou eatery, blue duck tavern, carrot apple muffin, celiac, celiac disease, chef, cherry chocolate almond granola bar, cooking, damgoodsweet, david guas, food, Gluten, gluten free, glutenfree, gourmet, health, health food, healthfood, healthy, healthy eating, honey almond bar, no gluten, orange glazed scone, park hyatt, pecan streusel, recipe, recipes, tori kramer | Leave a comment July 9, 2014
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Washington, D.C., one of the nation’s most accessible cities, is also one of the most popular for tourism. We’ve highlighted some of D.C.’s top attractions, hotels and restaurants, as well as travel tips for visitors with special needs, and accessible vacation destinations in neighboring Virginia.
GETTING THERE AND AROUND
About a sixth of the U.S. population—more than 48 million people—lives within a five-hour drive of Washington, D.C. Its three airports, Reagan National, Dulles and BWI, offer accessible ground transportation, including lift-equipped buses, and Reagan National has a wheelchair-accessible walkway to the Metro station. Amtrak serves D.C.’s Union Station, one of the Metro’s hubs.
The D.C. Metro system serves 86 stations in D.C., Virginia and Maryland. The Washington Metro Disability I.D. Card entitles riders to discount fares on the Metro and to Baltimore on MARC. The card must be purchased three to four weeks in advance and cannot be purchased at kiosks. For more information go to www.wmata.com/accessibility/metrorail.cfm
Parking and Taxis
On every D.C. block with government parking meters, there are two dedicated ADA meters, and the National Mall has dedicated drop-off zones. Consider saving money on hotel parking or time searching for parking by using Union Station’s public parking garage, which connects to the station via elevators. It’s open 24/7 and costs $22 for 12 to 24 hours, while hotel parking can easily be twice that. You can take the Metro from Union Station, and if you’re staying on Capitol Hill, a number of hotels, including the Hyatt Regency and Hotel George, are within a few blocks. Two companies offer wheelchair-accessible taxis in D.C. You can call or reserve a taxi online at:
Royal Taxi: 202-398-0500;
Hyatt Regency Washington on Capitol Hill
400 New Jersey Avenue, N.W.
The Hyatt Regency Washington features 23 ADA-compliant rooms, some of which have roll-in showers. Other accessible features include front door alerting devices and the hotel’s restaurants, lounge, fitness center and indoor pool. The hotel is three blocks from Union Station, and near many of the Smithsonian museums and the National Mall. For more information go to http://washingtonregency.hyatt.com/en/hotel/our-hotel/accessibilty.html
15 E Street, N.W.
One block from Union Station, presidential-themed, pet-friendly Hotel George features accessible guest rooms (some with roll-in showers), gym, meeting space and business center. Just off the lobby, the hotel’s excellent and accessible Bistro Bis serves modern
French bistro fare.
425 7th St., N.W.
This spacious, easy-to-navigate Italian restaurant near the National Mall and Newseum serves super-hearty family-style portions designed to serve four to six people. Carmine’s is a good option for those in wheelchairs, with food allergies like gluten intolerance, and groups and families.
818 Connecticut Avenue, N.W.
President Obama and the First Lady have dined at this accessible, contemporary power spot near the White House. The menu focuses on seasonal, locally-sourced ingredients, with gluten-free and vegan options.
The Smithsonian Institution
Museums and Galleries
The Smithsonian Institution’s 17 D.C.-area museums and galleries, including the Air and Space Museum, the African Art Museum, the American Indian Museum, and the National Zoo, are free and offer free manual wheelchair loans on a first-come, first-served basis. For more information, go to www.si.edu/Visit/VisitorsWithDisabilities
D.C. SUMMER TRAVEL TIP
If you’re planning on enjoying one of D.C.’s many outdoor festivals, remember that the city can be very hot in the summer. Make sure to have an umbrella for shade and plenty of water to prevent dehydration. For more information on accessibility in Washington, D.C., go to http://washington.org/DC-information/washington-dc-disability-information
QUICK TRIPS FROM D.C.
Williamsburg, Virginia, 150 miles south of D.C., draws visitors with its Revolutionary War-themed tours, activities and architecture, much of which is accessible. (Williamsburg’s Amtrak station has an accessible platform.) Nearby Busch Gardens theme park is accessible, with wheelchair rentals for a fee. For more information, go to www.colonialwilliamsburg.com/plan/accessibility.
The Fife and Drum Inn
441 Prince George Street
Williamsburg offers dozens of modern, accessible hotels, but if you want to stick with the colonial theme, the Fife and Drum Inn is just two blocks from the Amtrak station in Williamsburg’s historic section. The inn’s Drummers Cottage is wheelchair-accessible and sleeps up to six.
Boasting the world’s longest pleasure beach, Virginia Beach is a popular family destination 208 miles south of D.C. and 62 miles south of Williamsburg. Although peak seasons can be extremely crowded, a three-mile-long concrete boardwalk, flat, wide sidewalks and spacious curb cuts make Virginia Beach easy to navigate by wheelchair or scooter.
At the Virginia Beach boardwalk and 2nd Street, Grommet Island is the country’s first beach playground designed for children and adults of all physical capabilities, and is completely accessible. The playground has drawn visitors from all over the country, with 15,000 square feet of ramps and decking, soft play areas and sculptures, accessible play equipment, a shaded play area, picnic areas, and beach wheelchairs. For more information go to www.grommetisland.org.
Catering to children and adults with special needs, 70-acre Camp Grom is scheduled to open in Virginia Beach in spring 2016 as an accessible state-of-the-art beach-style adventure camp emphasizing rehabilitation through recreation.
Camp Grom activities will accommodate a range of abilities and will include wheelchair-accessible adventure trails, cable wakeboarding on a man-made lake, indoor boogie boarding, and ziplining. It will also feature a rehab pool and a wave simulator. For more information go to www.jtwalk.org/grom-camp.asp
—Eva LeonardPosted in Diseases, Featured, Uncategorized | Tagged accessibility, accessible, BWI airport, carmine's restaurant, dc metro, dulles airport, equinox restaurant, Eva Leonard, fife and drum inn, grommet island, hotel george, hyatt regency, reagan national airport, royal taxi, smithsonian institution, special needs, tourism, Travel, vacation, washington d.c., washington dc, wheelchair accessible, williamsburg, yellow paratransit | Leave a comment July 2, 2014
Caring Voice Coalition is proud to announce that we have earned a 4-star charity rating, the highest possible, from Charity Navigator, the nation’s largest charity evaluator.
Charity Navigator works to help charitable givers make intelligent giving decisions by providing information on more than five thousand charities nationwide and by evaluating their financial health. It calculates each charity’s score based upon several broad criteria, including how much is spent per dollar raised, what percentage of funds goes to programs vs. administrative and fund-raising expenses, and the organization’s long-term financial health. It then assigns a rating from one to four, with four being the best rating.
To view CVC’s Charity Navigator rating page, go to http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=13506#.U7Qk4Y1dX1gPosted in About Us, Diseases, Featured | Leave a comment June 30, 2014
Those with chronic conditions and limited mobility have more options than ever before for accessible travel. Eva Leonard talks to travelers with special needs and accessible travel experts about important considerations when planning a trip.
“Part of my job is to make vacation travel possible,” says Royal Caribbean International Manager, Access Compliance, Ron Pettit. “Many people with disabilities don’t think about traveling or taking a vacation as an option.
“They have challenges in everyday life; getting out of bed, getting out of the house, going to school, to work, going shopping, and going to the doctor. So sometimes, when they think of all their daily challenges, they think, ‘Oh my goodness—I don’t think I could go on a cruise.’
“Some folks are born with a disability, so they’ve learned how to adapt all along. But a lot of people have acquired a disability with age, or a medical issue, so they have to rethink and learn things all over again.”
Fear of the unknown can be a factor in deterring those with chronic illness from traveling, says Pettit, who has worked for the past 25 years to improve travel for the disabled, first for 17 years at Northwest Airlines, where he served as program manager for customers with disabilities, then joining Royal Caribbean in 2006.
“It’s those personal issues. ‘How do I go to the bathroom? How do I know about oxygen? How do I do these things?’ Because, while they have learned to adapt at home, or maybe when going out a little bit, the thought of going onto an airplane, or going onto a ship seems a little daunting. They ask, ‘How would I ever do this with my new limitations?’”
But many with disabilities are traveling. The U.S. Census reports that more than 38 million Americans live with disabilities, and, according to a 2005 study by the Open Doors Organization and the Travel Industry Association of America, U.S. adults with disabilities or reduced mobility spend around $13.6 billion on travel every year.
With the world’s population now at 7 billion, about ten percent require barrier-free and easily accessible facilities. “Global estimates [of people with disabilities] range from 600 million to 900 million,” says Lilian Muller, President of the European Network for Accessible Tourism.
To meet rising demand, accessible and barrier-free travel options have grown dramatically over the last two decades. Whether you opt for a leisurely Caribbean cruise, a scenic train ride through the Canadian Rockies, or something more distant and action-packed, careful research, planning and preparation can help you decide which getaway is best for you and allow you to fully enjoy the mood-boosting, stress-reducing rewards of travel.
BEFORE YOU GO
Before you start planning your trip, check with your doctor to assess what you can do, and, depending on the type of trip you plan to take, consider working with a travel agent who understands your needs. Says Pettit, “The more information you can share about your ability and needs, the better.”
Make arrangements well in advance for wheelchair, scooter, and medical device and supply accessibility and rental. Says traveler Tracy Schutt, “Since being on oxygen 24/7, traveling has become challenging, but not impossible. Making trips to Jacksonville, Florida, to visit family requires preplanning with my home care company to have oxygen supplies waiting when I get there.”
Another traveler with pulmonary hypertension suggests sending IV medication and supplies ahead by overnight service and arranging for an oxygen concentrator, so that all are in place on arrival.
Traveler Milli Washock advises, “Have a sheet handy with all pertinent medical information, medication, supplies and emergency contacts. Being on [intravenous infusion] therapy and oxygen, I have written on top [in big, bold letters], ‘Do Not Stop Pump.’ And, she adds, for devices that must be charged or plugged in, “When traveling to a foreign country, be sure to have the proper electrical adapters.”
It’s also important to get as much information as possible in advance about the availability of services you might need en route and at your destination. For example, find out what airline, hotel, rail, or cruise staff can assist you with when traveling, and if there is a medical facility specializing in your condition at your destination. If you’re planning a cruise, ask what types of onboard medical services are available, and if there is a fee.
HOTELS, RESORTS, AND THEME PARKS
Travel writer Candy Harrington has been covering accessible travel for the past 16 years and has authored books on the topic, including, Barrier-Free Travel; A Nuts and Bolts Guide for Wheelers and Slow Walkers. She also writes the barrier-free travel blog www.BarrierFreeTravels.com.
Harrington advises travelers with special needs to be very specific about their needs and ask detailed questions when booking a hotel room.
“First and foremost,” she emphasizes, “you have to understand that there are many types of accessible rooms, so you have to ask for an accessible room with the features you need. Don’t just ask for an accessible or an ‘ADA-compliant’ room.
“If you need a roll-in shower, specify that, because all accessible rooms do not have roll-in showers—some have tub/shower combinations. If you need the toilet grab bars on a specific side, you need to specify that too.
“And if bed height is an issue for you, inquire about that also. Bed height is not covered under the Americans with Disabilities Act (ADA), and you could very well end up with a 32-inch-high bed, which would make transfers very challenging.
“Don’t assume that the accessible hotel room is going to have the exact same features that your own home has, because in most cases, it won’t. Ask a lot of questions to make sure you get the access features you need.”
Some hotels are more accessible than others, and good indicators of their commitment can often be found online. Benchmark Resorts & Hotels comprises 13 properties across the United States, and the company’s website promotes Benchmark’s commitment to ADA compliance, with detailed accessibility information for each property.
Benchmark’s Turtle Bay resort on Oahu’s North Shore features 15 ADA-compliant guest rooms and one ADA-compliant cottage. Other accessible features include the resort’s swimming pools, hot tubs, fitness center, spa, restaurants, lounges, and a wide-open door-less gateway entrance.
Stockholm-based Scandic Hotels, with nearly 230 properties throughout Northern Europe, has won awards for its hotels’ accessible features, such as a minimum of two cane holders attached to the front desk, carpet-free meeting rooms and height-adjustable beds. In consultation with disability organizations, hotel guests, and team members, Scandic Hotels drew up an accessibility standard in 2003 that works as a checklist and template for the hotels. The standard has grown over the years, and today it contains 110 checkpoints to follow. Eighty-one of these points are mandatory for all hotels, and for new hotels, all points must be considered.
Community spoke with Magnus Berglund, Scandic’s accessibility director, about his work with Scandic and how his service dog, Dixi, helps him throughout the day.
How did you first become involved with Scandic Hotels?
It started about ten years ago, when I was a cook at Scandic Hotels. Due to a muscle disease, I was on sick leave for five years. When I was able to start work again, I contacted my former employer, with my ideas on how the hotel chain could increase accessibility and use accessibility to gain competitive advantage. In 2003, I was appointed disability ambassador for Scandic Hotels.
What is a typical day like for you as Scandic’s director of accessibility?
I work with all departments at head office, on everything from new hotels to renovations. I consult with Scandic’s hotel designers on accessibility, and I’m also involved with employee education within Scandic. I travel a lot, often several times a week, when I visit any of our hotels or when I’m invited as a speaker around the world.
Dixi is a service dog that helps me with everything from getting my clothes to the bed in the morning to picking up things that I drop. She also carries my computer bag when I’m flying, and she follows me on all my trips. Basically, she follows me everywhere I go in my daily work, at the office, at conferences, when I’m invited as a speaker, and so on.
What are some of Scandic Hotels’ smart design features?
A really smart design feature is our cane holder at the reception desk. We also have our vibrating alarm clock that the guest puts under the pillow, so if you’re hearing-impaired, the clock will wake you up so you “hear” the fire alarm. We also have special bread for breakfast for guests who have gluten or lactose intolerance.
What are some of the barriers that travelers with disabilities encounter most often when they travel?
I think it’s extremely different [depending on] what kinds of special needs people have. The big challenge is to get the right information.
For more information on Scandic Hotels, go to www.scandichotels.com/Always-at-Scandic/Special-needs
A video on Turtle Bay’s website features paraplegic surfer Jess Billauer, founder of the Life Rolls on Foundation, dedicated to improving the quality of life for young people affected by spinal cord injury, as he easily wheels through the resort, surfs with an adaptive electric surfboard and describes the independence that accessibility brings.
“We do everything possible to make sure everything is accessible,” says Gary Harnist, vice president of construction and design for Benchmark. “ADA guest rooms at Turtle Bay have automatic doors. The peepholes are lower. Bathrooms have roll-in showers, and shower, temperature and lighting controls are at a reachable height. We want to make sure the balconies are accessible, so we have sliding glass doors and ramps.”
Harnist advises, “Ask questions before you arrive. Let us know what your needs are. Many times we’ve sent staff members to the store to buy a lower shower seat, or called a rental company to get the kind of wheelchair a guest needs to insure that their stay is perfect.” For more information about Benchmark Resorts & Hotels, go to www.benchmarkresortsandhotels.com/about/social_responsibility/ada_accessibility_compliance
As with hotels and resorts, when planning a trip to a theme park, checking in advance for clarity on accessibility and disability policies can be a good idea. Walt Disney World and Disneyland Resorts made headlines in October when it replaced its Guest Assistance Card (GAS) program with a Disability Access Service Card (DAS).
A Disney Parks blog post by Thomas Smith, social media director, Disney Parks, explains that guests with disabilities can now “request a DAS at Guest Relations and receive a return time for attractions based on the current wait time.” Prior to the change, which Smith said was prompted by abuse of the program, guests with disabilities had been able to go directly to the front of the lines for Disney attractions.
For more information on Walt Disney World and Disneyland Resorts, go to http://disneyparks.disney.go.com
“Cruises are great for people who need to move slowly and take their time. You can be as active as you want and do everything, or you can do as little as you want, have a nice spot in the lounge and watch the sea,” says Royal Caribbean’s Pettit. “We’ve designed our cruise ships to be very accessible, so there are elevators, ramps, and platform lifts. We have options all over the ship for guests with limited mobility.”
Travel agents can be helpful in sorting out accessible cruise options. Says Pettit, “If you’ve never cruised before, you don’t know the questions to ask, and that’s why we recommend using a travel agent.
“There are travel agents who specialize in accessible cruises and in specific conditions. Some specialize in dialysis cruises, autism cruises, deaf cruises, blind cruises, and disability in general, and not just group cruises. They deal with individuals or families. They specialize, may have the disability themselves, and know the questions to ask. They can help walk you through making an informed decision about the right cruise line and cruise for you.”
Says traveler Milli Washock, “A few years ago, I went on a weekend cruise, with a wheelchair, room air concentrator, oxygen tanks, a portable concentrator and a BIPAP, and did quite well. The cruise line, Carnival, went out of their way to bring me [my oxygen] tanks wherever I was and made sure everything was taken care of in the cabin and with shows and dining. They even had distilled bottled water. We had a great time.”
For those cruising for the first time, Washock suggests, “Book a room with open air, a window and/or a balcony, and liberally use hand sanitizer everywhere.”
Says Pettit, “Oxygen has changed over the years. What works well for a lot of people now is the new portable oxygen concentrator, what I call’ the magic box.’ It takes ambient air and turns it into breathable oxygen on demand.
“This works well for many people who require oxygen therapy. It may not work for everyone. Some people need continuous air flow. They may need a flow rate that’s higher than what the portable concentrators can give. But for many, many people, portable oxygen concentrators have been revolutionary.
“Portable oxygen concentrators allow passengers to use the same equipment in the plane, on the ground, and on the cruise ships. We have power outlets in our staterooms, so passengers can charge overnight, and they can bring extra batteries as well.
“Technology and the ability of our staff to assist our guests go a long way to help [those with special needs] think about cruising as a possibility. We provide our staff with sensitivity training and technical training, primarily for wheelchair assistance and assisting guests on and off the ship. That’s the number one request that we get.
“We provide training about different types of disabilities and how to communicate with different types of guests. We focus primarily on people with mobility, hearing, and visual disabilities, but we do talk about guests with cognitive or developmental disabilities.
“From an identification perspective, there’s always the question of dignity in providing too much information. The more information we have, the more we can assist you. If we don’t understand your condition, we may provide inappropriate support. If we know ahead of time, it makes things easier.”
In February, Royal Caribbean was the first cruise line to be named as autism-friendly by Autism on the Seas, a agency that develops cruise vacation services for those with children with special needs.
Says Pettit, “Our products and services are accessible for guests with autism and other developmental disabilities. We have priority check in, boarding, departure, and special dietary offerings like gluten-free items. We offer modifications to our youth program onboard, like dropping down an age group if the child would be more comfortable, based on ability.
“We offer autism-friendly movies: The sound is not so loud, the lighting is a little bit lighter, and the kids are encouraged to get up and walk around during the movies. We added a social story to help families dealing with autism prepare for their cruise. Often children with autism need a little structure and preparation, [so we let them know that] when you get to the ship, this is what you’re going to see and this is what you’re going to do, so they can prepare. And really, it’s about the entire family and not just children. Many of our features are used by teens and adults with autism.
“Everybody is different. Their needs are going to be different. We can work with our guests and our travel agents to see if we can help accommodate that need. A lot of our business continues to be booked through travel agents. For many people, it’s their first time, or they may have special needs. You may need a little additional help from an expert. It makes for a much better cruise experience.”
Royal Caribbean’s Access Department is a resource center for guests and travel agents. Staff can answer questions about accommodations for guests with disabilities and can be reached at 866-592-7225 (phone); 954-628-9708 (local); 954-628-9622 (fax) or email email@example.com. Or for more information, go to www.RoyalCaribbean.com/AccessibleSeas
WHERE TO CRUISE
Pettit says that cruises that involve the United States are often preferable for those in wheelchairs or those who need to move slowly. “Alaska, Hawaii, New England, and Western Pacific coastal cruises are all great options, simply because they involve U.S. ports of call, and, generally, when you’re within the U.S., you have a much better sense of accessibility.
“There are curb cuts. There are accessible restrooms and facilities. Whenever you get outside of the U.S., while there are accessibility regulations in place, they may not always meet the same level as in the U.S.”
“The Caribbean has mixed levels of accessibility. We’ve seen progress over the years in many of our ports of call. People tend to gravitate to the Eastern Caribbean itineraries more because more of the ports of call are docked—that means you can roll on and roll off the ship with ease. When you get to the Western Caribbean, you have more ports that are tender,” says Pettit.
“We sail to more than 300 ports of call around the world, and about one third of those ports are tender. What that means is that our ships cannot dock at a pier. They have to anchor in the harbor, and so we transfer guests onto a smaller vessel, usually called a tender. They take that tender to the port and get off there. That process may pose some challenges for guests in wheelchairs and those who have difficulty walking.
“Our larger ships, like Oasis of the Seas and Allure of the Seas, are great ships for guests in wheelchairs and those with difficulty walking, because they never have to tender. They always dock.”
Bob Curley, Caribbean travel expert for About.com, notes that the U.S. Virgin Islands must comply with the ADA and that “Barbados has also made a pretty concerted effort to be compliant, as have Aruba and St. Maarten. Every cruise port in Jamaica is a non-tender port, and St. Thomas also has a dock.”
Says Pettit, “Europe is becoming increasingly accessible, although it’s mixed. A lot of our ships sail there in the summer. There are cobblestone streets, and there may not always be curb cuts. The buildings are older, so they might not always have the wider doors and accessible restrooms. It does require that our guests and our travel agents research the different ports of call to see which ones are more suited than others.
“The Mediterranean is increasingly becoming more accessible, and the more northern and the western you go, it gets more accessible. When you look at bigger ports, especially those that have hosted the Olympics, because they hold the Paralympics, they have increased accessibility over the years.
“Athens and Barcelona are recent examples, so they may have more accessible taxis and motor coaches and overall facilities for people in wheelchairs. You go to some of the smaller ports, like Santorini, and the island ports, and there are mixed levels of accessibility.
“The challenge we get with different ports of call is usually with accessible vehicles; if a guest has some ability, or a caregiver who can assist them into a regular taxi, or they can go up a few steps into the motor coach, more options become available.”
To improve accessibility for guests with more limited mobility, Pettit says that, in Europe, Royal Caribbean has created Easy Tours—a modified version of the cruise line’s panoramic city tours.
“It’s a narrated ride throughout the city on a bus, with a couple of opportunities to get off to look around. These have a motor coach with a lift, or, more often in Europe, a van with a ramp in the back. These are in about 80 ports and are a great option for guests in wheelchairs or scooters, who have limited capability.”
Rail travel has its advantages for those with chronic conditions and medical devices, and train trips throughout the U.S. and Canada can be a good place to start.
Says traveler Milli Washock, “I always used to find a plug at the gate [at the airport] for last-minute charging, but I don’t fly anymore. Traveling [domestically] by train is easier in that there is a plug by every seat. It takes longer, but you have a bigger selection on dining and with movies if you plug in your laptop or device.”
With input from disability advocacy organizations, over the past five years, Amtrak has made accessibility improvements at more than 200 stations. All Amtrak trains have accessible seating and restrooms, and all long-distance trains have accessible bedrooms. Amtrak also offers a discount to passengers with disabilities and their companions.
For more information, go to www.amtrak.com/accessible-travel-services.
Other countries have also made recent improvements in rail travel accessibility. Australia, for example, offers a host of services and special deals to meet the needs of travelers with disabilities, including accessible services in most of its trains. For more information, go to www.australiaforall.com
But accessible international rail travel might be even closer than you think. “We are more accessible than flying or taking the bus,” says Jacques Gagnon, senior manager, media and community relations for Via Rail Canada, Canada’s national passenger rail service.
“When you take Via Rail, you can enjoy traveling while looking out the window and seeing scenic portraits of cities, prairies, and the Rockies, while being comforted by having a quiet time.
“It’s spacious. We have invested in making cars accessible, roomy, and user-friendly for people with limited mobility and special conditions. We also cater to gluten-free and other special dietary needs, with advance notice.
“Canadian laws and regulations provide ample services for people with limited mobility. It’s part of the fabric of Canada to provide accessibility to its citizens and to travelers.
“At various stations we have lifts to allow people with wheelchairs to board the train. We have a dedicated area where the person will anchor his or her wheelchair safely.
“We also allow someone, or a service animal, to accompany that person and ride at no additional cost. We ask to receive 24-hour, or ideally, 48-hour advance notice that someone with a specific condition will be boarding the train so the attendants can recognize and attend to their needs.”
For those interested in viewing gorgeous vistas while riding the rails, Gagnon says, “There are two long-haul routes—one is The Ocean—a 22-hour journey from Montreal to Halifax. The train travels along shorelines of the Atlantic Ocean and has a panoramic car.
“The other one is The Canadian, between Toronto and Vancouver, through the Canadian Rockies and the prairies. It‘s a very scenic three-and-a-half-day journey. The track goes across terrain where there are no highways and roads. It’s very unique—even in the summer time, the Rockies are covered with snow. It’s a very elevated, beautiful terrain, with views of the Pacific Ocean.” For more information on Via Rail, go to https://www.viarail.ca/en/travel-info/special-needs/accessibility
Getting as much information as possible and alerting the airline to your needs in advance, as well as allowing time for delays, are critical when traveling by air. Be sure to factor in potential traffic issues, lengthy distances between gates, crowds, long lines and flight delays when connecting. And don’t be hesitant to ask for assistance, such as wheelchairs or electric carts, experienced travelers advise.
One flyer says, “My husband has Huntington’s disease, and for him, we found going on the plane with assistance has given him more time to get to his seat without people pushing and being impatient. Also, we request wheelchair assistance at all airports.
“If you’ve ever been to Jamaica, Miami, or Atlanta airports, then you know it’s like walking a mile from one point to another. Imagine if you only have half an hour to get from one gate to the other. Always ask for assistance when needed. Most of the people who work at airports are only to happy to help.”
Traveler Keti Galanos says, “Panic attacks are commonplace for those of us afflicted. I am at the near norm readings for PAH, yet will take medication for the next year. I request a wheelchair, as I cannot run between gates in the airport, and I always panic and am out of breath.”
Traveler Cheryl Kneal recalls, “I traveled to Chicago from Orlando over Christmas. I had my portable oxygen concentrator and had the airline take me to the gate for departure, and then, when we arrived, to where I was picked up, to conserve energy.”
Kneal adds that, to deal with stress and panic attacks about running out of oxygen, she meditated frequently during the two-hour flight.
For those with limited mobility, addressing needs step-by-step ahead of time is key to alleviating stress and making travel as hassle-free as possible. When making your airline reservation, let the agent know if you’ll be traveling with a wheelchair or scooter, if you’ll need one at the airport, and if you’ll need to transfer to one of the airline’s aisle wheelchairs (a narrow wheelchair designed to fit aircraft aisles) to help you board or deplane. Also ask if you can use the aisle wheelchair during the flight to get to the bathroom.
Ask to keep your wheelchair until you get to the gate, check it there, and have it returned to you at the gate on arrival. (Depending on the type of wheelchair you have and space available, it will either be stored in the cabin or in the baggage hold during the flight.)
Flight attendants can help passengers use the aisle wheelchair to get to the restroom, but not in the restroom, and many onboard restrooms are not wheelchair accessible. Flight attendants are also not required to lift or carry passengers. Some fliers with limited mobility limit fluid intake before and during a flight to prevent the need to use the restroom, however doing so can present the risk of dehydration and other medical problems.
Flying can also be unpredictable. Air traffic and weather delays can mean the plane is stuck on the runway before takeoff or circling for an extra hour before landing. If you have limited mobility, it might be advisable to consider flying with someone who can help you in the restroom, or catheterization, rather than limiting fluids.
Candy Harrington advises those who have concerns about navigating airport security in wheelchairs and with medication and medical devices to check the TSA guidelines beforehand.
“Although the TSA is exempt from the ADA and the ACAA, they have developed specific guidelines for dealing with disabled passengers. They list these guidelines on their website, so it’s a good idea to familiarize yourself with them, so you will know what to expect.”
Traveler Ruth Cozad says that she was pleasantly surprised with her TSA experience. “We went to Hawaii with both oxygen and CPAP machines and had an amazing trip. Going through security was my big worry, and it went so smoothly.” For more information on TSA guidelines, go to www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions or call the TSA Cares hotline at 855-787-2227 with any access-related questions prior to travel.
For some travelers with chronic conditions, especially those traveling with oxygen, driving can provide the most stress-free journey, and help them slowly ease into travel. Taking short trips from one central location can also help to conserve energy and get the most out of a trip.
Cozad suggests, “My advice would be to stay in one location and take day trips, instead of moving each day. We often take driving trips that last several weeks, and those are easy enough, with my husband unloading and reloading oxygen and CPAP equipment, plus our luggage.”
Milli Washock says, “A lot of people are using the Inogen One portable oxygen device, and it’s nice to go on a plane or a ship. I find it great for long-distance auto travel.”
A potential problem, though, says Washock, is that the device does not have a HEPA filter. She recalls that once, while she was dining out, “a man was smoking a cigar in the nearby bar, and suddenly I was ‘smoking a cigar’ and could not breathe.”
In this case, Washock found that traveling by car had benefits. “Thankfully, I had an oxygen E tank in the car and did not have to permanently abandon my dinner, but it gave me something to think about.”
Despite such challenges, Washock says, “It is good to travel if you can. Just because our bodies do not cooperate the way we want does not mean our brains and lives have to shut down. And, she notes, travel, no matter the distance, can be enhanced by state of mind. “Take it slowly, and enjoy the world around you, whether traveling to your porch or across the world. Each day is a new day.”
About Us, Diseases, Featured | Tagged accessibility, accessible travel, ada compliant, allure of the seas, americans with disabilities act, americans with disability act, autism, autism on the seas, barrier-free travel, Benchmark turtle bay resort, bob curley, candy harrington, cheryl kneal, chronic condition, chronic disease, chronic illness, disabilities, disney parks, disneyparks, European Network for Accessible Tourism, jess billauer, keti galanos, life rolls on foundation, lilian muller, limited mobility, magnus berglund, milli washock, mobility, oasis of the seas, open doors organization, Pulmonary Hypertension, ron pettit, royal caribbean, ruth cozad, scandic hotels, service dog, spinal cord injury, thomas smith, Travel, traveling with disability, trip, u.s. travel association, vacation, via rail | Leave a comment June 1, 2014
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