Post Update: Thanks to some helpful staff of the Minnesota State Legislature, I am happy to report I now have my MNsure health care policy in place and retroactive to the beginning of 2014. I do not like to use my blog and social media platform for this purpose, but I felt I was out of options. This saga took close to five months to resolve. While I am relieved, I will not forget all I had to go through to make this simple transaction a reality.
As a self-employed, small business owner, I had high hopes for the Affordable Care Act. I was giddy at the thought of lowering my premium costs, which now total $6,000 a year for an individual policy with a very high deductible.
Obamacare, as it is usually called, was passed in spring 2010, but didn't go into effect until this year. I couldn't wait to sign up.
If only it were that easy.
We all know the story: Obamacare launched and the federal website was an immediate disaster. A few states fared better than the national program as they had done their homework and created well-designed exchange systems.
Sadly, this was not the case in Minnesota, where MNsure is the state-run version of Obamacare.
When MNsure launched in late October 2013, I was probably one of the very first to go on the website. Certainly I was one of the first kicked off the website. We've all read the news accounts of people attempting over-and-over to create a MNsure account, shop for insurance and then filter through the qualifying process. I had the classic bad experience. Countless times, I went on the website, only to have it freeze up or boot me off. Then, at one point, the system would no longer let me login at all and I got a "password fail" message.
I was stuck. I was frustrated. Still, I persisted.
Personally, this was an especially stressful time in my life, as my mother was dying after a long battle with Alzheimer's disease. I had moved Mom to my home and she was in hospice. I remember sitting by her bed and holding her hand while also holding on the phone for a live MNsure representative to help me in my quest to obtain more affordable insurance.
This was probably the first time I cried.
After holding for hours and hours at various times of the day, I was finally able to get through to tech support. Surprisingly, getting my password changed proved to be the easiest fix.
After that, things went very wrong.
My mother died in late November, so I probably was not at my sharpest.
However, I was determined to have new insurance by the end of the year. And, since I had been a caregiver for two years, I believed I would qualify for a healthcare subsidy of some type.
News reports indicated the MNsure website was more stable and it appeared to be true. I logged on easily and sailed through the application process. Next, I started shopping for healthcare policies. To my surprise, the policy costs were about the same as the open market and there didn't seem to be any way to find out if I qualified for a reduction due to my income level.
That's when I discovered, I had clicked on the wrong tract -- the tract that was for those who wanted to purchase insurance with no financial assistance. This proved to be a mistake that would cost me, both financially and emotionally.
Back to the phone, which meant more hours calling and calling and holding and holding. Many times, I would simply have to hang up since I had a life with responsibilities and obligations. Other times, I would be holding for a long period and suddenly the call would disconnect.
That's when I cried again.
I was beaten down and I was frustrated. But I persevered.
Finally, on the last day of 2013, I held for 90 minutes until I finally reached a live person who listened dutifully to my tale of woe. She cheerfully told me to "disregard the first application" and submit a second one on the website, this time following the tract that would allow the system to determine my eligibility for health insurance assistance.
Really? It was that easy?
With high hopes, I hung up the phone and began a second application. .
This second application was my second big mistake.
The MNsure website indeed allowed me to create and complete a second application. I could even see both approved applications in my account. However, individuals may not have two applications. MNsure does not like two applications. Two applications will prevent the user (me) from doing anything further.
I was locked out.
That's probably the third time I cried.
Luckily, I had not cancelled my existing policy so it would continue into the New Year. I still had insurance but it was continuing to cost me dearly.
After my holiday visitors left in mid-January, I reluctantly opened my ever-expanding healthcare folder again. I think I deserved credit for my persistence and my patience.
I would need this patience as 2014 began.
My latest quest for affordable healthcare coverage included a long series of calls, emails and more calls to various MNsure personnel. I encountered individuals, who always sounded nice and chipper at the beginning of our calls. Yet, as my problem became more challenging for them, they would lose interest. It was never possible to talk to the same person twice and non one called back to follow up.
One day, in a fit of frustration, I even tweeted about my situation. Since I have over 9,000 followers, I thought that might get some results. Within minutes, I had a response from someone obviously in a management postion. Bryan asked me to call him. I did call Bryan. He seemed interested and promised he would help me.
After exchanging emails back and forth, it was determined that I needed to speak to a specific department. I was given a phone number. I called that department, but no one could help me in the least. More emails and phone calls to Bryan in management, but I've never heard from him again.
He lost interest.
By this time, I was also losing interest. Yet, I didn't have a choice. I had to keep going.
During my numerous phone calls, I learned that compounding my situation was the fact that the people at MNsure could only see one application in my account. On their computer screen the good application appeared. My second application -- the one I actually wanted to use -- did not even appear in their system. I was told by most everyone I spoke with that, "We need to get rid of that first "bad" application and then you will be able to apply for insurance." Yet, even though everyone promised that would be accomplished in hours/days/weeks (take your pick), it never was resolved.
Three months have passed and I am still stuck.
Yesterday, I called again. This time, I spoke to someone who realized my issue needed the help of someone who really knew how to get something done. He passed me along to John, who promised the first application, or as I have taken to calling it, the "Very, Very Bad Application," would be removed within 24 hours. John actually called me back this morning, which thrilled me to no end. He promised the Very-Very Bad Application would be gone by the afternoon.
It was not.
This afternoon, I called again. I was not happy. I was upset. I wanted results.
Once again, I told my story. I was put on hold for a very long time and then the first person transferred me to a youngish man. Let's call him Tim.
Tim did not ask for my story. He thought he knew what was needed (spoiler alert: He did not). After putting me on hold for an extended period of time, Tim returned to the call to give me a long-winded explanation that involved a pie queues. Huh? First time I had heard this explanation. His estimation was that this would take weeks or as much as a month to resolve my issue "because of the pie queues."
Tim insisted it was out of his hands. He was done with me.
No sir. I was getting mad. I wouldn't let him go. Why, I asked had no one told me about the pie queue and what WAS it anyway?
Obviously, Tim did not know what he was talking about. While he really didn't want to hear my story, I insisted he listen and recounted it briefly. Silence.
Tim responded that I could forget the lengthy pie queue tutorial.
Thank goodness. Although now I was hungry for pie.
On hold several more times, this phone call was now over an hour long. Yet, for the first time, I actually felt hopeful. Was Tim the Man? Could he erase the Very-Very Bad Application?
Tim came back on the phone and (very pleased with himself) announced that he had indeed deleted the Very-Very Bad Application. Problem solved, he wanted to end the call.
Not so fast, buddy.
"Wait," I said, "I need to check."
The bad application was still there. I told Tim I appreciated what he had done, but that I didn't want to hang up until I knew it was actually gone.
To bide my time, I also asked him about how to proceed once the Very-Very Bad Application was history. His response, "Just create a new application."
Wasn't this how I got into big trouble in the first place?
I brought this to Tim's attention. He did not address that issue.
I kept checking to see if the very bad application was gone, but it still appeared. Tim argued that it was deleted but just not showing up on my screen. I cleaned out my cache, cookies and more but no-go. On my screen, nothing had really changed. I had just invested another 75 minutes of my time and no progress had been made.
Tim told me it might take a day or so for the change to process through the system. Really? Perhaps, but I had heard this before, and the Very-Very Bad Application was still there.
Tim's response, "You can't be stuck in the past. You have to learn from the past. You have to move forward."
My incredulous reply, "Wait, can you say that again, I want to write it down."
Long sigh from Tim, but he repeats it.
I write it down.
Then he tells me to stop checking my account to see if the Very-Very Bad Application has indeed been deleted. He says, "If you keep checking, it won't change."
I write that down, too.
Tim is now getting antsy. He wants to hang up. "I've put in 47 minutes on this call and I have other people to help," he tells me.
After I write that down, I start to bluster. I want to keep him on the line so I know for certain deleting the Very-Very Bad Application will indeed be the big fix I need. I want to make sure the system will allow me to finish my second application, or what I was now calling the Very-Very Good Application.
Getting snippy, I change the subject and inform Tim the MNsure on-hold music is beyond horrible. Elevator music is bad enough, but elevator music that is out of sync and filled with static noise is just plain torture.
He chuckled. Tim knew exactly what I was talking about. His comeback? "We have 99,000 bigger problems than the music on hold."
Silence on my end. I am writing this down as well.
Even though I have been instructed not to check the applications, I do so and report to Tim that both applications still appear in my account. Nothing has changed.
Tim is exasperated with me. I tell him I won't hang up and he will have to hang up on me. I plead with him. Really, I am at the end of my rope.
Tim does hang up, but not before telling me, "No one can do anything more for you."
I look at my handset, hear the dial tone and start to cry.
It is March 19. I think MNsure has broke me.
About eight years ago my mom began to demonstrate personality changes and memory issues. Mummy, as we affectionately called her, was repeating herself, having difficulty communicating and had begun hoarding -- plastic bags, Kleenex, pennies and even little pats of butter.
Looking for answers, my sister took Mummy to see her family doctor, calling ahead to advise him of the memory issues and obsessive behavior.
During her appointment, the doctor asked a series of questions, conducted a cursory exam and within minutes had a "diagnosis."
"Don't worry," he said, patting my mother's hand, "It's not Alzheimer's disease. It's only dementia."
My mom left her doctor's office feeling relieved that day. However, by this point in our lives, my sister and I had had plenty of experience with Alzheimer's disease. We knew there was plenty to worry about.
This doctor's visit happened eight years ago, but there is still a confusion surrounding Alzheimer's and dementia. Many people use the terms interchangeably -- giving the impression they are one in the same. Others, think both Alzheimer's and dementia are diseases, with dementia being less damaging or severe than Alzheimer's disease.
These myths are widespread, even among the media some healthcare providers, and are very difficult to dispel.
First, it can be challenging to wrap your head around this complex subject. The confusion may also stem from a lack of clear reporting in the media. Additionally, Alzheimer's has become a dreaded word. It's a word many people avoid using, preferring instead the softer, less-threatening term, 'dementia.'
Whatever the reason, the all-to-common misconception is that Alzheimer's disease and dementia are one in the same.
They are not.
To understand dementia, you have to first recognize it is not a disease. Rather, it is an overall, umbrella term used to describe a group of symptoms that affect a person's mental and physical abilities.
You could compare it to the term fever, which tells you a person has an elevated temperature with perhaps other accompanying symptoms. However, fever is caused by something that is happening in the body.
The same is true of dementia -- it is result of something happening to the body.
There are many types of dementia symptoms and they can often vary from person-to-person. Some of the more common symptoms are short-term memory loss, depression, irritability and mood changes, lack of coordination and motor skills, difficulty walking, loss of communication skills, difficulty solving problems, repetitive behaviors and a change in sleep patterns.
So, what is the root cause of these dementia symptoms?
Alzheimer's, a progressive, always fatal brain disease, is the culprit in about 70 percent of the dementia cases and affects more than 5.3 million in the U.S. alone.
Yet, you can have dementia symptoms and not have Alzheimer's disease.
Other diseases that bring about dementia symptoms include dementia with Lewy Bodies, vascular dementia, fronto-temporal dementia, Parkinson's disease, Huntington's disease, Creutzfeldt-Jakob disease, prolonged and excessive alcohol or drug use as well as several other rare types of diseases also affecting the brain. Although dementia symptoms vary widely, all of these diseases affect a person's thinking, behavior and memory. The disease steals the person's cognitive abilities and destroys their lives in the process.
Knowledge is power. The more we know and the better we can communicate about Alzheimer's, the more powerful we become. Use your power to set the record straight about the myth that Alzheimer's and dementia are one in the same.
You may open up some conversations about this disease and who knows where it might lead?
A new study about death and Alzheimer’s disease made headlines yesterday. It revealed what all of us in the Alzheimer’s community already knew: Alzheimer’s disease is a “sleeping giant” and it is dramatically under-reported as the cause of death, especially in older Americans.
The study, published in the medical journal of the American Academy of Neurology, reveals that deaths are categorized and recorded by the cause listed on death certificates.
However, those numbers are deceiving as many death certificates list an immediate cause of death, such as pneumonia, while the deceased may have had Alzheimer’s or another form of dementia for many years. Alzheimer’s degrades the brain severely, leaving a person vulnerable for many other medical complications. In other words: Yes, the deceased had pneumonia, but it was not the root cause of death. At the root, there was Alzheimer’s disease.
Currently, the Centers for Disease Control and Prevention has Alzheimer’s disease listed as the nation’s sixth leading cause of death, but this latest study would move it up to third place, just behind heart disease and cancer.
This is one more huge piece of evidence that we need in the battle against Alzheimer’s. But will it make any real difference?
Keith Fargo, director of scientific programs at the Alzheimer’s Association, said, “We would like to see a response that is commensurate with the problem.”
“Alzheimer’s disease…needs to be taken seriously, and if we have the right kind of investment as a country, then we will be able to makes strides similar to what we’ve made in heart disease, HIV and cancer,” said Fargo.
Congress recently allotted more funds for research — $122 million. That’s a start. What we actually need is more in the range of two billion. This may sound like an astronomical number. However, it is miniscule compared to the personal and government financial outlay that is anticipated if we don’t find a cure or at least effective treatments for the disease.
What are the anticipated costs? By 2050, the projected cost of Alzheimer’s will be a trillion dollars.
Let’s pay the two billion now, rather than paying so much more later.
It was last November. I was writing a post about my mother’s final days on this earth. Mom had battled Alzheimer’s for more than eight years, and her sad, long journey was almost at an end.
The image I chose for my post was a beautiful Tree of Life creation which fit perfectly with my subject matter. I remember hesitating just for a moment. Was it an image I had purchased from a service? Had I found it in Creative Commons? Was it okay to use?
My mind was hazy, and I was certainly distracted. However, I believed I had permission to use the image. After all, why else would I have it in my image library? In haste, I used the image and clicked the Publish button.
After that, I didn’t give it another thought. I had so much on my mind.
My mother died a few days later and immediately I was deluged with messages from friends, family, hospice, the cremation society, online connections and more.
One of these missed emails was from Marian Osher, the talented artist who was the creator of Tree of Life. Marian asked me to remove the image since she held the copyright and I had posted her image without permission, attribution and/or compensation.
However, I missed seeing this initial email. When she didn’t receive a response from me, Marian referred the matter to the legal team of my website host and within days they followed up with a cease and desist email. This email got my full attention.
How could I be so stupid?
Immediately, I removed the image. I knew using a copyrighted image without permission was illegal and it could mean a boatload of trouble — as well as a hefty financial price tag. It had happened to bloggers I know and even to my own former spouse (who hired someone to build a website and didn’t know the designer used copyrighted images without obtaining approvals).
Not only that, I was mortified.
When I first started blogging, I had used images willy-nilly, mainly plucking what I liked from Google Images.
Then, I attended a blogger conference and wandered into a session I had not even planned on attending. The woman at the podium was talking about copyright laws and how many bloggers unknowingly use images — images not in the public domain — without permission. She warned this practice was not only unacceptable, it was illegal.
Illegal? It’s a hard word. I wanted no part of illegal.
On a mission, I spent an entire day purging my blog of images I had unwittingly used for free and without permission. Moving forward, I began purchasing images through stock photo sites or opting for public domain images.
I was vigilant about the images on my blog. Until that day back in November.
After I removed the Tree of Life image, I contacted its creator, Marian Osher, a talented painter and printmaker, who is based in Maryland.
In an email, I apologized and explained what was happening in my life at the time. While this was not an excuse, I hoped it might provide some perspective. I told Marian I knew better and would do better. I asked her not to take further legal action, instead requesting we work out the situation between ourselves.
To my relief, she graciously agreed.
Then something unexpected began happening. Marian and I continued to exchange emails and we spoke by phone. We had made a connection.
I shared with Marian that my own creative work had been re-posted on websites without my permission. I had even come across my writing changed just a little and then attributed to someone else. This left me feeling angry and hurt. Indeed, we could relate to each others experiences.
During our back-and-forth conversations, Marian and I hatched a plan. Why not work together and use this situation to pass the word on to others? That way, some good could result from my error. We could each express our feelings and perspective.
Since this is my blog, I’ll go first. My advice to bloggers and website owners everywhere: Think before you click.
If you find an image you like, contact the creator to seek permission and negotiate permission, any fee and how the image creator should be listed on your blog or website. As mentioned above, I now use stock-photo services, such as istockphoto.com, where you can buy credits and find lots of great images.
Not interested in the paying route? Then, take your own photos, create your own art or search for work that is in the creativecommons public domain. However, be sure the images you choose are indeed free to use and always include a credit exactly as the creator has listed it.
Remember, the burden is on the user. If you are unsure, then err on the side of caution.
These are my suggestions, and I encourage readers to leave comments with their own experiences as well as links to acquiring legal images.
Now, here is what Marian wants to share:
“Nancy is a sensitive person who has learned from her experience. She has graciously offered to help educate internet users about copyright issues and to spread the word about the damage and hurt that creative infringement causes, even if it is unintentional. Users, please think before you take an image from the internet. Remember, SOMEONE created that artwork, and if you can’t find the source to ask permission, DON’T USE IT! It is not flattering when someone takes your artwork and posts it without credit and without your permission. It is painful, and you will wake up in the middle of the night knowing that the integrity of your artwork, your creation has been compromised. Thank you, Nancy, for caring.” Marian Osher
Please See Marian’s Awesome Work at These Links and Learn More about Copyright Infringement:
The good news in all of this is that I now have a new friend, and her name is Marian Osher. My story had a happy ending. However, I’m well aware the situation could have taken a much different turn.
My final admonishment to bloggers and others: Don’t do what I did. The next time you get ready to hit the Publish button, make sure you know where the images came from and that you are using them legally.
When my mom was still alive, my sister and I often visited her in assisted living and later in memory care. Many times, we would be the only outside visitor.
In fact, there were many residents whose family didn’t visit them. Sitting hour-after-hour in the lobby, these aging seniors would watch the front entrance intently. They looked as though they were constantly waiting. Waiting for someone who rarely or never came to visit.
Their waiting and obvious loneliness made me incredibly sad.
Where were their family members? It seemed many adult children simply settled their parent or parents into the care home and then never looked back. They convinced themselves (or tried to convince themselves) that all the needs of their loved one would now be satisfied.
While it’s true the physical needs can most often be fulfilled in a care home, emotional needs may not. Residents in care homes still require advocates in their lives. They desire and need a continual emotional connection to family, friends and others.
What I call the “affection-connection” is important for all humans — no matter the age.
What can be done about the elderly who are disconnected from their families? Can we force adult children to spend more face-to-face time with their aging parents? Can affection for your parents be legislated?
Last year, China tried to do just that by passing a law requiring children to take more financial and spiritual responsibility for their elderly parents or risk being fined or sued. While the law is probably more symbolic than an actual legal threat, it was obviously designed to send a message to the Chinese citizens: Step up and take responsibility for your parents.
Personally, I was surprised to learn that elder neglect is a problem in China. I viewed China as having a deep, engrained respect for the aged. However, these traditional family values are changing, even in this ancient land.
Like much of the world, the population in China is graying, and the country will have an estimated 221 million people over the age of 60 by the year 2015.
China’s policy of limiting families to a single child has had a huge effect on the family structure. With a smaller generation of younger people, there are significantly fewer children to shoulder the care for aging parents. Combine this with the Chinese economy, which has been undergoing explosive economic growth in recent years, pushing many young adults to pursue education in large cities and later lucrative jobs — often requiring long hours — in locale’s often far away from their parents. Finally, most Chinese retirees have a tiny pension, if at all, which means they cannot afford to travel to see their family.
These factors in China lead to an ever growing number of aging, poor and lonely parents. Hence the “Elderly Rights Law,” which made headlines around the world.
I don’t advocate any U.S. laws to force children to visit their parents. But I have to wonder about a society in which adult children will hand off their responsibilities to paid workers at a care home, and then see their parents rarely or not at all.
It’s heartbreaking to see those people waiting in the lobby. Don’t forget, the years roll by and soon that could be you watching the front door and longing for family.