Welcome to Part 3 of May Awareness! Hi Guys and Gals!
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May is Better Sleep Month by the Better Sleep Council. Did you know 90 million Americans have their sleep disrupted by snoring? The Better Sleep Council has so much information on getting better sleep. They even have a quiz to help you determine what type of mattress would suit you best. Check it out here!
A tick-borne disease caused by bacteria Borrelia Burgdorfer.
Very common (More than 3 million cases per year in the US)
Treatment from medical professional advised
Requires lab test or imaging
Can last several days or weeks
Transmitted through tick bites
Many people with early-stage Lyme disease develop a distinctive circular rash at the site of the tick bite, usually around three to 30 days after being bitten. This is known as erythema migrans. The rash is often described as looking like a bulls-eye on a dartboard.
Some of the common symptoms are as follows:
Symptoms of late-stage Lyme disease:
Numbness in hands and legs
Short term memory loss
Finally, but not exclusively, May is the awareness month for Neurofibromatosis. The Children’s Tumor Foundation website has so much valuable information on this incurable genetic disorder (s). They have a superb resource library. NF can cause tumors to grow on nerves throughout the body. You can donate, volunteer, and advocate by visiting their website for more information.
Oh boy! May is chock full of awareness issues we can explore! Due to the vast amount of days, this post will cover only a few, with a brief description and where you can find further information. These are the links culled from around the web.
May Is Better Hearing & Speech Month a time to raise awareness about communication disorders and available treatment options that can improve the quality of life for those who experience problems speaking, understanding, or hearing.
It’s American Stroke Awareness Month. This one is close to my heart. My dad and other relatives have had strokes before they passed. Not so pretty. A stroke happens when a blocked artery (ischemic stroke) or leaking or bursting of a blood vessel (hemorrhagic stroke). Some people may have only a temporary disruption of blood flow to the brain, known as a transient ischemic attack (TIA), that doesn’t cause lasting symptoms.
Arthritis Awareness Month was highlighted in a former post. You can read about it here. Also, check out my resources and learning area to see how you can volunteer or donate.
Food Allergy Month. Food Allergy Awareness Week provides a unique opportunity to help raise awareness of food allergies and anaphylaxis. Each of us works in our own way to raise awareness of food allergies and anaphylaxis. When we all work together and focus our efforts over the course of one week, it amplifies our message and reaches many more people than anyone of us could do alone.
Global Employee Health and Fitness Month. May is Global Employee Health and Fitness Month (GEHFM), an international initiative that prioritizes health and fitness in the workplace. It’s the time of the year when organizations should reflect on what they are doing (or not doing) to help their employees live healthy lifestyles.
Hepatitis Awareness MonthHepatitis is an inflammation of the liver. Viruses cause most cases of hepatitis. The type of hepatitis is named for the virus that causes it; for example, hepatitis A, hepatitis B, or hepatitis C. Drug or alcohol use can also cause hepatitis.
Lupus Awareness Month. Lupus is a chronic, autoimmune disease that causes inflammation anywhere in your body and can affect any of organ, the skin, and joints. There are an estimated 1.5 million Americans living with this awful disease. Share this post to help us and the @LupusFoundationofAmerica raise awareness of lupus this month during Lupus Awareness Month. Visit lupus.org/lupusawarenessmonth
Melanoma/Skin Cancer Detection and Prevention Month. With over 5 million cases diagnosed in the United States each year, skin cancer is America’s most common cancer. Fortunately, skin cancer is also one of the most preventable forms of cancer. About 90 percent of nonmelanoma skin cancers and 85 percent of melanoma cases are associated with exposure to ultraviolet radiation from the sun. By sharing facts about the dangers of unprotected exposure and encouraging people to check their skin for warning signs, we can and will save lives.
National Asthma and Allergy Awareness Month. Since 1984, the Asthma and Allergy Foundation of America (AAFA) has declared May to be “National Asthma and Allergy Awareness Month.” It’s a peak season for people with asthma and allergies, and a perfect time to educate patients, family, friends, co-workers, and others about these diseases. More than 60 million Americans overall have asthma and allergies.
About 25 million Americans have asthma (19 million adults and 6.2 million children)
About 32 million Americans have food allergies (26 million adults and 6 million children)
About 21 million Americans have hay fever, rhinitis or nasal allergies (20 million adults and 5.6 million children)
These numbers paint a picture of how many people in the U.S. are managing asthma and allergies. But they don’t paint a picture of the overall impact these diseases have on people and communities.
National Celiac Disease Awareness Month. When a person with celiac disease eats gluten, the protein interferes with the absorption of nutrients from the food by damaging a part of the small intestine called villi. Damaged villi make it nearly impossible for the body to absorb nutrients into the bloodstream, leading to malnourishment and a host of other problems including some cancers, thyroid disease, osteoporosis, infertility, and the onset of other autoimmune diseases.
National High Blood Pressure Education Month. In the United States, nearly 68 million people have high blood pressure, which is also called hypertension. Hypertension increases the risk of heart disease and stroke, the first and third leading causes of death in the United States.
National Osteoporosis Awareness and Prevention Month. Every year, more Americans are diagnosed with osteoporosis, a disease that causes bones to weaken and become more likely to break. You may not know that you have this “silent” disease until your bones are so weak that a sudden strain, bump, or fall causes your wrist to break or your hip to fracture. Learn the facts so you can protect your bones!
While 1 in 2 women over 50 will develop osteoporosis, 1 in 4 men will, too.
It’s possible to make bones stronger.
Around 25 % of people die within the first 6 to 12 months after a hip fracture.
Oh, and there are more, we’ll explore them in a later post. What else can I tell you about these? Let me know in the comments.
May is a huge awareness month. I’ve written about arthritis, an important topic for me, but there are also many other important illnesses we should also be talking about.
is a progressive, neurodegenerative disease that is 100% fatal. You can help change the facts.
(From alsa.org) ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language. “A” means no. “Myo” refers to muscle, and “Trophic” means nourishment – “No muscle nourishment.” When a muscle has no nourishment, it “atrophies” or wastes away. “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening (“sclerosis”) in the region.
More people have BPD than schizophrenia and bipolar disorder combined.
People with BPD commit suicide at 400 times the rate of the general population
BPD is more common in women than in men.
BPD is the 3rd leading cause of death for young adult women between 15-24.
5.9% of the adult population has BPD, they commit suicide at an alarming rate, and women are especially vulnerable to the disorder. That’s why we have Borderline Personality Disorder Awareness Month. To raise awareness and awareness, end the stigma around the condition, and encourage people to get the help they need.
According to the National Institute of Mental Health (NIMH) BPD is:
“A mental illness marked by a pattern of varying moods, self-image, and behavior. These symptoms often result in impulsive actions and problems in relationships. People with BPD may experience intense episodes of anger, depression, and anxiety that can last from a few hours to days.”
Mental Health –
a great website for this is https://www.mhanational.org/mental-health-month. This website is chock full of great information! As a member of a family who knows the importance of observing mental health month, I urge you to learn as much as you can. Another partner, NIMH, has offered up some additional informative websites
I’ve had fibromyalgia since my late 20’s. As I’m 59 now, that’s 30 plus years of dealing with the pain and nerve ending never-ending soreness and pain. Add a bit of arthritis, and disc degenerative disease and it makes for the perfect “How will I ever get through this day” type of day.
So how did Fibromyalgia day come about?
Reading from the National Fibromyalgia Associaton website:
It all started here at the NFA back in 1998, when our founders, Lynne Matallana and Karen Lee Richards, set out to get as many cities, counties, and states as possible to proclaim May 12th as Fibromyalgia Awareness Day.
They mailed out over 100 proclamation packets to individuals and support groups across the U.S. with suggestions on how to approach political leaders about the importance of creating awareness for this virtually unknown illness. That first year, Lynne was able to get the Los Angeles County Board of Supervisors to officially proclaim May 12th as Fibromyalgia Awareness Day (L.A. County includes 88 cities). Approximately 25 other jurisdictions across the country did the same.
The next year, about 150 proclamations were done. In the first 5 years of Awareness Days, there were over 2,000 proclamations in cities, counties, states, the U.S. Senate, Congress, and even at the White House, thus officially making May 12th National Fibromyalgia Awareness Day. The trend continues to this day and many thousands of Awareness Day proclamations have been made all over the world. That means that each of the entities that have proclaimed an official Fibromyalgia Awareness Day recognizes that FM is a legitimate life-altering illness, and they support the under-served population of people living with it by calling for more research and new treatments to help improve their quality of life.
May 12th is a day to remember how far we have come, from the days when almost no one had even heard the word “fibromyalgia,” to today when almost everyone has heard of it and knows someone who lives it. It is also a day to celebrate yourself for the fibro warrior you are, or the fibro warriors you support. You are part of this thriving community that was one of the first truly disruptive organizations to make a difference in how the world treats people in pain.
To celebrate the 20th National Fibromyalgia Awareness Day, create your own event or fundraiser in support of the NFA. Click here for the NFA’s guidelines and tips to help you get started. May 12th is just around the corner—let’s spend it together!
What is Fibromyalgia / Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory, and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
I hope this explanation helps you with a bit of knowledge about Fibromyalgia.
Amidst the global reality of Covid-19, this graduation season looks very different. Most seniors are wrapping up their final year virtually and commencement ceremonies are up in the air. Graduates can’t be with their friends, teachers, mentors, or all of their loved ones to properly close this chapter. But despite these challenging times, Minted is still here to help celebrate the hard work of 2020 graduates with Announcements, Digital Party Resources, Cards, as well as Custom Photo and Art Gifts
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Graduation Announcements: Even if you can’t get together in person, send a Graduation Announcement. Minted has launched new designs to address the unique circumstances faced by 2020 grads amongst the Covid-19 pandemic – in some cases with wit and humor, and in other cases with enduring gratitude and sentiment.
Plan a Digital Party: Minted’s new (and free!) virtual backgrounds families and their friends can celebrate together with festive background designs from independent artists.
Make the Most of Every Memory: Minted’s unique photo gifts can help families capture their grad’s favorite memories and showcase their hard work and dedication. Grads themselves can show friends they care with photo gifts as well. While they can’t be together in person, new grads can surprise and delight their fellow graduates with a special gift on their doorstep.
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Definition of arthritis by Merriam Webster:inflammation of joints due to infectious, metabolic, or constitutional causes also: a specific arthritic condition.
Everyone will at some point-in-time in their lives discover arthritis in their own bodies. Osteoarthritis is the most common type of arthritis, it is the number one cause of disability in the United States! Today, one in four people has arthritis in this country. There is no cure, but arthritis can be somewhat managed by following your doctor’s recommendations for pain medications, exercise, and diet. Still, arthritis is a painful condition. I have osteoarthritis and can attest to its disabling effects and the pain associated with arthritis.
“When you join the movement, you become part of the answer. No matter how you want to give back, we have the right opportunity. Take part in an event. Advocate on behalf of others with arthritis. Form meaningful connections and Live Yes! locally or online. Take a moment today and join our community of champions to help those with arthritis live their best life.
Nothing like a change in the temperature to take my body from feeling like an 8 or 9 to a 0. My back hurts, the backs of my legs hurt, my head is throbbing. No, I don’t have the Corona. The culprits today seem to be my disc degenerative disease, arthritis, and fibromyalgia. Each one of these runs into the other, so I can’t say for sure what parts of my body are crying out from exactly which one, I only know that I’m hurting and wishing there was something I could do about it.
Now, of course, the temperature probably has nothing scientifically to do about it, but that being so, I know when the weather changes for the worse, or there is some upcoming bad weather or colder temperatures, I hurt more.
◆ If you don’t know what (DDD) Disc Degenerative Disease is, Spine Health at spine-health.com has a good overview.
◆ For Fibromyalgia, a good website to check out is https://www.cdc.gov/arthritis/basics/fibromyalgia.htm as well as
the Mayo Clinic site at https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780.
◆ Did you know that Arthritis is the number one disabling condition in the world? https://www.arthritis.org/. I can tell you that no person in my family has escaped its cruelty. It’s painful and irritating.
What’s happening due to COVID 19:
Because of COVID 19, my ablation surgery for my lower back had to be postponed, so each day that goes by the pain in my lower back continues to get worse. There is nothing I can do about that so I’m forced to do whatever I can use whatever I have to make things better. No amount of Ibuprofen seems to make much difference. While it soothes the pain in the short term, it doesn’t last that long. My prescription medications don’t last a full four hours either, and none of my medication choices completely remove the pain.
Which leads to:
I bring out the heating pad. This soothes. I bring out the ice. It numbs. Within minutes afterward, back comes ye ole pain. Ouch. But during the time it’s working it’s so nice. Other ways to ease body pain from these conditions are listed next. One thing I don’t have but want is a leg lift pillow. A Leg Lift Pillow Wedge gently lifts the knees to provide outstanding support and comfort for your lower back when lying down. The special wedge design eases stress on the spine, correcting posture and aligning the spine to help decrease arthritis back pain.
So what else is helpful for these conditions? Here are seven which one can try:
This form of Chinese medicine involves inserting thin, small needles through the skin at specific acupoints on the body. It is designed to stimulate nerves, muscles and connective tissue, improve blood flow and activate the body’s natural painkillers. Research suggests that it can help relieve pain, and it is used for a wide range of other complaints.
Good for osteoarthritis, fibromyalgia, low back pain, neck and shoulder pain, bursitis, carpal tunnel syndrome
￼Gentle manipulation with moderate pressure has been shown to reduce joint pain and stiffness, and even improve range of motion. However, timing is important. Listen to your body. Massage may not be as helpful during a very active flare when joints are especially tender and sensitive.
Good for osteoarthritis, low back pain, fibromyalgia, rheumatoid arthritis
Tai chi is a Chinese practice that combines gentle flowing movements, deep breathing, and meditation. It has been shown to not only reduce joint pain but also improve range of motion and function, as well as feelings of well-being. The Arthritis Foundation offers a Tai Chi DVD specifically created for people with arthritis.
Good for fibromyalgia, rheumatoid arthritis, osteoarthritis
Yoga is an Indian practice that uses deep breathing, meditation and body pose. It has been shown to decrease joint pain and stiffness, as well as improve relaxation and reduce stress. The Arthritis Foundation offers a Yoga DVD specifically created for people with arthritis.
Good for fibromyalgia, rheumatoid arthritis, osteoarthritis, low back pain
Losing one pound removes four pounds of pressure on swollen, painful joints. Maintain a healthy weight by combining a balanced diet with regular physical activity. Make sure you choose food from the five important food groups (fruits, vegetables, lean protein, low-fat dairy, and whole grains). Try to do 30 minutes of low-impact exercise five days a week.
Good for osteoarthritis
Physical therapists can provide various ways to reduce strain and pressure on painful and swollen joints. These include manual therapy and counseling on proper positioning and body movement. They can also recommend assistive devices such as braces and splints to support joints and shoe inserts to relieve stress on the lower extremities.
Good for all forms of joint pain (back, knee, shoulder, hand, wrist, ankle
These gels work by stimulating sensory nerve endings in the skin, and the body responds by reducing pain signals through the nervous system. Voltaren Gel and capsaicin cream are two options, but a trip down the drugstore aisle can offer even more options without a prescription. Some Hemp options may also work, just make sure you stay away from the THC.
Good for osteoarthritis and fibromyalgia.
What products or services have you found that are helpful for arthritic conditions or Fibromyalgia? Let me know in the comments.
Since most of us are quarantined in our home due to COVID 19, on this Easter weekend, we could take some time to reflect on some of these awareness items for the month of April.
April is Autism Awareness Month. Limb Loss Awareness Month, Parkinson’s Awareness Month, and Stress Awareness Month. This post addresses briefly what these are and gives you resources for more information as well as how to volunteer your time, make a donation, or get involved in other ways.
⁃ Autism is a developmental disorder characterized by difficulties with social interaction and communication, and by restricted and
You can volunteer, donate, or fundraise at Autism Speaks. Check here for the ways: https://act.autismspeaks.org/site/SPageServer/?pagename=walk_volunteer&wmenu=sec_abt_walk
• Limb Loss
⁃ What causes limb loss?
⁃ Reasons for Amputation
⁃ The most common is poor circulation because of the damage or narrowing of the arteries, called peripheral arterial disease. … Other causes for amputation may include Severe injury (from a vehicle accident or serious burn, for example) a Cancerous tumor in the bone or muscle of the limb. Feb 5, 2020, WebMD
And of course, some people are born missing limbs.
You may read more at:
You can volunteer with the Amputee Coalition here: https://www.amputee-coalition.org/work-with-us/
• Parkinson’s Disease
⁃ Parkinson’s Disease. Parkinson’s disease is a brain disorder that leads to shaking, stiffness, and difficulty with walking, balance, and coordination. Parkinson’s symptoms usually begin gradually and get worse over time. As the disease progresses, people may have difficulty walking and talking.
Read more at https://www.nia.nih.gov/health/parkinsons-disease.
– Stress is a feeling of emotional or physical tension. It can come from any event or thought that makes you feel frustrated, angry, or nervous. Stress is your body’s reaction to a challenge or demand. In short bursts, stress can be positive, such as when it helps you avoid danger or meet a deadline. May 5, 2018
If you are experiencing high volumes of stress, sometimes giving, volunteering is the way to go. Psych Central has a wonderful article. Read it here: https://psychcentral.com/blog/how-volunteering-can-help-your-mental-physical-health/
A weighted blanket or duvet would be a perfect addition to your stress relief arsenal, a nice gift for someone living with autism, Parkinson’s, and even for someone living with limb loss. Try something from Weighted Evolution. They have three different options to choose from. and come in several colors. They’re premium bamboo weighted blanket that’ll improve sleep, lower anxiety and increase well-being. Check them out.
My family and extended family have personal connections to limb loss, Parkinson’s, and most definitely stress. Won’t you please take a few moments to think about who in your family, a circle of friends, or acquaintances who deal with any of these issues. Your donation of volunteering time, money, or purchases really makes a difference in the lives of those who deal with these every single day. Won’t you get involved?
Note: Some links in this post are affiliate links. I get a small commission if you click and purchase. Purchasing through this website does not affect your pricing.
Driver Donavan Dunn loads Maddie Holt into the van on Nov. 21, 2017. The only way Maddie and her mother, Meagan Holt, can make the trip to the hospital is by using a service provided by Medicaid called non-emergency medical transportation, or NEMT. (Heidi de Marco/KHN)
Driver Donavan Dunn unloads Maddie Holt after driving her to Seattle Children’s Hospital on Nov. 21, 2017. “I have to drive different,” says Dunn. “It’s always in the back of my mind that I have somebody on board that’s fragile.” (Heidi de Marco/KHN)
Driver Donavan Dunn covers Maddie Holt with her blanket after securing her wheelchair. Dunn says he received special training to transport patients like Maddie, who is loaded onto a motorized platform, wheelchair and all, into the van and then carefully strapped in. (Heidi de Marco/KHN)
JoNel Aleccia, Kaiser Health News Photos by Heidi de MarcoEVERETT, Wash. — Unable to walk or talk, barely able to see or hear, 5-year-old Maddie Holt waits in her wheelchair for a ride to the hospital.The 27-pound girl is dressed in polka-dot pants and a flowered shirt for the trip, plus a red headband with a sparkly bow, two wispy blond ponytails poking out on top.Her parents can’t drive her. They both have disabling vision problems; and, besides, they can’t afford a car. When Maddie was born in 2012 with the rare and usually fatal genetic condition called Zellweger syndrome, Meagan and Brandon Holt, then in their early 20s, were plunged into a world of overwhelming need — and profound poverty.“We lost everything when Maddie got sick,” said Meagan Holt, now 27.Multiple times each month, Maddie sees a team of specialists at Seattle Children’s Hospital who treat her for the condition that has left her nearly blind and deaf, with frequent seizures and life-threatening liver problems.The only way Maddie can make the trip, more than an hour each way, is through a service provided by Medicaid, the nation’s health insurance program started more than 50 years ago as a safety net for the poor.Called non-emergency medical transportation, or NEMT, the benefit is as old as Medicaid itself. From its inception, in 1966, Medicaid has been required to transport people to and from such medical services as mental health counseling sessions, substance abuse treatment, dialysis, physical therapy, adult day care and, in Maddie’s case, visits to specialists.“This is so important,” said Holt. “Now that she’s older and more disabled, it’s crucial.”More than 1 in 5 Americans — about 74 million people — now rely on Medicaid to pay for their health care. The numbers have grown dramatically since the program expanded in 32 states plus the District of Columbia to cover prescription drugs, health screening for children, breast and cervical cancer treatment and nursing home care.With a Republican administration vowing to trim Medicaid, Kaiser Health News is examining how the U.S. has evolved into a “Medicaid Nation,” where millions of Americans rely on the program, directly and indirectly, often unknowingly.Medicaid’s role in transportation is a telling example. Included in the NEMT coverage are nearly 104 million trips each year at a cost of nearly $3 billion, according to a 2013 estimate, the most recent, by Texas researchers.Citing runaway costs and a focus on patients taking responsibility for their health, Republicans have vowed to roll back the benefits, cut federal funding and give states more power to eliminate services they consider unaffordable.Already, states have wide leeway in how to provide and pay for the transportation.Proponents of limiting NEMT say the strategy will cut escalating costs and more closely mirror private insurance benefits, which typically don’t include transportation.They also contend that changes will help curb what government investigators in 2016 warned is “a high risk for fraud and abuse” in the program. In recent years, the Centers for Medicare & Medicaid Services (CMS) reported that a Massachusetts NEMT provider was jailed and fined more than $475,000 for billing for rides attributed to dead people. Two ambulance programs in Connecticut paid almost $600,000 to settle claims that they provided transportation for dialysis patients who didn’t have medical needs for ambulance transportation. And the mother of a Medicaid patient who was authorized to transport her child for treatment billed Medicaid for trips that didn’t take place. She was sentenced to 30 days in jail and ordered to pay $21,500.Last March, Rep. Susan Brooks, an Indiana Republican, introduced a resolution that would have revoked the federal requirement to provide NEMT in an effort to provide states with “flexibility.” That effort stalled.Another Republican proposal in 2017 would have reversed the Affordable Care Act’s Medicaid expansion and reduced federal funding for the NEMT program. It failed, but other efforts by individual states still stand.Former Health and Human Services Secretary Tom Price and CMS Administrator Seema Verma encouraged the nation’s governors to consider NEMT waivers, among other actions, in a March letter to them.“We wish to empower all states to advance the next wave of innovative solutions to Medicaid challenges,” they wrote. The Trump administration has used state waivers to bypass or unravel a number of the Obama administration’s more expansive health policies, and has granted some states’ requests.At least three states, Iowa, Indiana and Kentucky, have received federal waivers — and extensions —allowing them to cut Medicaid transportation services. Massachusetts has a waiver pending.Critics of the cuts worry the trend will accelerate, leaving poor and sick patients with no way to get to medical appointments.“I wouldn’t be surprised to see more of these waivers in the pipeline,” said Joan Alker, executive director of the Georgetown University Center for Children and Families.Because medical transportation isn’t typically covered by the commercial insurance plans most Americans use, it’s unfamiliar to many people and could be seen as unnecessary, said Eliot Fishman, senior director of health policy for Families USA, a nonprofit, nonpartisan consumer health advocacy group.Formerly a Medicaid official in the federal government, Fishman called the transportation program “vital” not only for children with severe disabilities, but also for non-elderly, low-income adults.CMS released results of a 2014 survey of Medicaid users, which found that lack of transportation was the third-greatest barrier to care for adults with disabilities, with 12.2 percent of those patients reporting they couldn’t get a ride to a doctor’s office.“This is not something to be trifled with lightly,” Fishman said. “We’re talking about a lifesaving aspect of the Medicaid program.”About 3.6 million Americans miss or delay non-emergency medical care each year because of transportation problems, according to a 2005 study published by the National Academy of Sciences.That same study analyzed costs for providing NEMT to patients facing 12 common medical conditions and found that providing additional transportation is cost-effective. For four of those conditions — prenatal care, asthma, heart disease and diabetes — medical transportation saved money when the total costs for both transportation and health care were tallied.Medicaid is required to provide NEMT services using the most appropriate and least costly form of transportation, whether that’s taxis, vans or public transit.Most states rely on NEMT brokers or managed-care organizations to administer the transportation services. Other states run the service directly, paying providers on a per-ride basis, while some use local ride services and pay independent taxi firms to shuttle patients.Proponents of revamping NEMT note that disabled children like Maddie and other people with serious disabilities are in little danger of losing services. In Iowa and Indiana, Medicaid transportation remains available to several groups of patients, including those classified as “medically frail,” though the definition of who qualifies can vary widely.In addition, one managed-care provider, Anthem, continues to transport Indiana Medicaid patients, despite the waiver that was first enacted in 2007.Still, Medicaid clients like Fallon Kunz, 29, of Mishawaka, Ind., are often stuck. Kunz, who has cerebral palsy, migraine headaches and chronic pain, uses a power wheelchair. When she was a child, she qualified for door-to-door service to medical appointments, she said.Today, she lives with her father, whose home is outside the route of a Medicaid transit van. Getting to and from medical appointments for her chronic condition is a constant struggle, she said. Taxis are too expensive: $35 each way for a wheelchair-enabled cab.“The only way I can get rides to and from my doctor’s appointment is to ride the 2 miles in my wheelchair, despite all kinds of weather, from my home, across the bridge, to the grocery store,” she said. “Right outside the grocery store is the bus stop. I can catch the regular bus there.”Sometimes, she’s in too much pain or the Indiana weather — warm and humid in the summer, frigid and windy in the winter — is too much to battle and she skips the appointment.“Today I didn’t go because it was too cold and my legs hurt too much,” she said on a December Tuesday. “I didn’t feel like getting blown off the sidewalk.”In Maddie Holt’s case, she was shuttled to Seattle Children’s on a rainy Tuesday morning in a medical van driven by Donavan Dunn, a 47-year-old former big-rig trucker. He works for Northwest Transport, one of several regional brokers that manage NEMT services for Washington state.Dunn said he received special training to transport patients like Maddie, who is loaded onto a motorized platform, wheelchair and all, into the van and then carefully strapped in.“I have to drive different,” said Dunn. “I have to watch my corners, watch my starts, watch my stops. It’s always in the back of my mind that I have somebody on board that’s fragile.”The transportation service can be used only for medical visits to the specialists who treat Maddie’s condition, which is caused by mutations in any one of at least 12 genes. If Meagan Holt needs to pick up prescriptions or get groceries, she leaves Maddie and a second daughter, Olivia, 3, at home with their dad and takes the bus or walks to her destinations.Caring for a severely disabled child is not the life she expected, Meagan Holt said, but she cherishes time with Maddie, who has learned to communicate through tactile sign language spelled into her hand.“She knows about 100 words. She knows the alphabet,” Meagan said. “She likes Disney princesses. She loves ‘Frozen.’”Maddie is one of hundreds of NEMT-eligible children transported to Seattle Children’s each month. Last September, for instance, more than 1,300 clients made more than 3,600 trips at a cost of more than $203,000, according to the Washington Health Care Authority, which oversees the state’s Medicaid program called Apple Health.The need is so great, in fact, that the hospital created a transportation will-call desk to help organize the comings and goings.“When we realized how much transportation is a barrier to getting to your appointment, we decided to do something about it,” said Julie Povick, manager of international exchanges and guest services at Seattle Children’s.“The majority of our patients are in survival mode,” Povick added. “You need a lot of handholding.”But Verma, the architect of Indiana’s Medicaid overhaul plan, has suggested that too much handholding might be “counterproductive” for patients — and bad for the country.In a 2016 Health Affairs essay, Verma noted that early analysis of the effects of curtailing NEMT in Indiana showed that more Medicaid patients with access to the program said transportation was a primary reason for missed appointments than did members without access.“Moreover, 90 percent of [Healthy Indiana Plan] members report having their own transportation or the ability to rely on family and friends for transportation to health care appointments,” she wrote.But Marsha Simon, a Washington, D.C., health policy consultant who has tracked NEMT for years, said Medicaid is the option of last resort. People who are able to get rides on their own already do.“If 90 percent can and 10 percent can’t, what about the 10 percent?” Simon said.It’s a question that haunts Kunz every day.“I’m a college student, I have a cat,” said Kunz, who is studying psychology online at Southern New Hampshire University. “I’m just a regular human trying to do things, and the inaccessibility in this area is ridiculous.”
Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.
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