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Anyone who has ever confronted a serious health issue knows that going on line for information can be a daunting process. How do you figure out what’s true and what isn’t, or even begin to sort through all the data that comes your way? And when it’s help you’re seeking, how do you get it in the easiest way possible?
I know from many years of “talking” – by phone, in person, and by email – to thousands of woman recently diagnosed with breast cancer or with a recurrence of the disease that it’s very easy to be misled into information that is not helpful. And I know from that experience that some government websites are either not very helpful — like that of the National Cancer Institute — or downright confusing and very hard to navigate, like that of the Food and Drug Administration.
So maybe I should not have been surprised and appalled to find that the website set up to guide people in making choices related to Medicare was worse than unhelpful. It’s pretty hostile to people trying to get information.
I’m only 59 years old, but I’m eligible for Medicare because I have ALS. ALS is one of those conditions that qualifies for almost automatic Social Security Disability coverage, and that coverage includes Medicare eligibility.
When I learned that I could get Medicare, I quickly turned to my older friends who are already taking advantage of the program, and asked them for guidance. Turns out there are lots of places that claim to be helpful. I consulted the folks who had helped me navigate the Social Security Disability application process and they quickly pointed me to www.Medicare.gov
That seemed promising. A central place to get information, learn about health care plans, and sign up for the best care available, given the resources I have.
If it sounds too good to be true, it is.
The first thing that happens when you go that website is that you have sign into the site. If you haven’t done that before, you have to register. This is to be expected, of course. So I signed up, and got myself a unique identifier and password, which would (should?) allow me to come back to the site anytime and get what I needed. I poked around on the site, did some searches, and then took a break.
Keep in mind that this is 2011. I don’t think it’s unreasonable to expect, in the 21st century, that a website that provides you with a unique identifier and password keeps track of information that you enter so you won’t have to enter again. But the government has not figured out how to do that with the Medicare site. So every time I visited the site to try to get information, I had to re-enter my date of birth and the start date of my Medicare coverage. Those are two bits of information that the government knows. Why do I have to re-enter them every time?
To make matters worse, searching the website for the plans available for someone in my situation – under 65, in the San Francisco Bay Area seem to be the relevant factors – turns up far less than the full range of options open to me. This from the go-to site for Medicare plan options.
I know that the site was showing me less than the full set of my true options only because the person helping me with this process is experienced with Medicare and knows the plans available in the area. The government’s Medicare site said there was only one plan available to me, from a company of which I had never heard. Fortunately, the person helping me knew better.
There is a lot of talk at the federal level of making Medicare more efficient. Maybe the efficiencies that need to take precedence are the ones that will help people who need Medicare to navigate the system. Especially people who don’t have help or the resources to find the help they need to deal with this unnecessarily complicated system.
© Barbara A. Brenner 2011
Thanks for verily using permissible grammar. Almost all sites were absolute gibberish. Remarkable website & writing skills. You my friend have Talent! I just StumbledUpon this. Not bad. I’ll give it a thumbs up.
Just yesterday I tried to contact Medicare because I had gotten a statement from them which showed claims “processed” from January to April of THIS year, but many of the claims (there were about 40) were with dates from LAST year; I thought there might be error, or in a worse case scenario, fraud. After a lengthy conversation with s wonderful Medicare person, I learned that as of last year there was a “Massive Processing” event – this means that millions – yes, MILLIONS of claims from doctors and hospitals had been “RE-EVALUATED”, and “corrections” were made, to the tune of CENTS, not dollars! My skepticism tells me that some Feds may have been “realigning the figures” so that they could be used in the budget deficit discussions. Who knows. Just searching for info is not the only issue with Medicare, although I would say that most of it is pretty well run.
Cheers and a hug, Mary
Barbara – there are people who help others with just these kind of searches; retired people who know the insurance industry, including Medicare, for instance. Perhaps there are people near you who could share in your burden of search. (I know you have many friends who will be at your elbow as well – no countering their services I promise!)
It gives one pause about Government run health care, does it not?
It’s not just government — it’s any large entity. Try to get a straight answer from any insurance company, for example.
Great piece, Barb. So simple, so cogent. Because of one of the comments, I’m wondering, what does this suggest to you about what role the government should and shouldn’t have in provision of health care in America? That is, does the government’s failings that you point out here have any implications for those of us who long have advocated single payer health care?
Donna’s question (Hi, Donna!) is right on point. I wonder, though, whether it’s specific to healthcare. Having had to negotiate (and in fact we’re still negotiating) the govt’s sites related to immigration and the visa process, the fact of the matter was that we wound up having to hire a lawyer. In the end, it wasn’t all that complicated — no more than you’d expect anyway — but the information on the sites, the numbers you can supposedly call for “help,” etc., were all but useless. I couldn’t figure out what to do, and I’m relatively used to reading this kind of legalese/beaurocratese mumbo-jumbo. I suppose it’s at too much of a micro level for someone like the president to get involved, but the US does not manage its bureaucracies well (). I’m all for single-payer in any case, but perhaps it would have the added advantage of reducing the “thinformation” glut?
Although I have not used the Social Security web site very much, I have had numerous extremely helpful interactions with the people who answer the phone when calling for Social Security information. It would not be surprising if different government departments have different client-service cultures. Too bad Medicare does not seem to be one of them. I, too, still favor Medicare for All (sounds better than “single payer”).
Barb: First I appreciate your blog. Keep it coming. Second, I think one of the reasons for confusion , aside from the simple explanation of incompetence, is the involvement of private part B carriers in the process. Single payer would make things quite simple. Aside from the hurdle of getting into the program, Medicare works very well once you are in.
Yes, it could all work a great deal more efficiently. You’ve chosen the best solution–getting help from an experienced user. I wrote to Medicare recently asking why there was no option allowing clients to choose to receive notices of medical visits and services via email rather than on hard copy sent through the US Postal Service. Given the zillions of Medicare transactions every single day, wouldn’t voluntary switching to electronic delivery yield a considerable savings in taxpayer money? (I wondered what the contractual arrangement might be between Medicare and the USPS). Naturally, I went to their website first to see if I could email this suggestion to their Ombudsman (yes, there is one) but discovered that, alas, there was no way to send feedback; one could only “complain” to the Ombudsman about specific abuses –it was not possible to send a comment or suggestion.
We have a close to single payer system in Kaiser, and they administer the Medicare program for members who have it. It is far from perfect, being a huge orginization itself…but it does (most of ) the trick of providing basic & specialized medical care and takes a very credile stab at more advanced/intensive care. I find that treading the halls and ins&outs of Kaiser is a bit like working “with” the Gov’t….but easier. And if you want a look at what will probably be the Single Payer model….it’s the Kaiser of today.
Those of you who know me, know I was a health care ins. lawyer for many years….and of the options available for people today, my pick is Kaiser. Of course if you have an unfortunate disease, condition or illness….you are in trouble no matter where you get care. Modern medicine is limited and there are no magic bullets.
And care is a comodity….which our society does not want to deal with. Who we keep alive and at what cost and how we are going to order care…… The politices of triage are a looming battle that has not begun.
In re medical care being a commodity (hi Alice), I’ve been aware that I wish it would be possible to provide to everyone (at least everyone in our wealthy country) with all the medical care that would make a meaningful difference in the length and quality of their lives. That is, I wish that we could limit the rationing to eliminating unnecessary, wasteful care. I don’t think I’m alone. I think all of the discussion about health care reform assumes that it is possible for America to afford to provide everyone with all the care that reasonable people would consider reasonable for people to want, and I wonder if that is true. My mother had a routine aortic valve replacement at the age of 82, at Kaiser. I was surprised that they did open heart surgery on 82 year old people. Reasonable people would say, did say, it was reasonable for Kaiser to offer and for my mom to want the surgery. I didn’t and don’t know what I would do if I were in my mother’s position, but I’d rather have a choice to make whether or not to have the surgery, than be told that it was a reasonable thing to do if I could pay for it but not offered to those who couldn’t afford to pay for it. Can I assume that Kaiser will offer me the choice like it did my mother, or in my generation will it be too expensive? If not this procedure, then the same question/issue re some other procedure. (Hi Wendell.)
Extremely insights! I have been hunting for something such as this for a time now. Thanks!
All this started when Bush was president. He sold out Medicare to these
private drug insurance companies. Then it became the total clusterfarq
it is today. Before that happened, I had never had the kind of trouble
with Medicare scripts I have these days. Now the Repubs want to do
the same thing to the REST of Medicare. What a nightmare.
Medicare was not broken, but because it flies in the face of
all that Ayn Randian misanthropy the corporate hoors so love,
Bush & Co. “fixed it” like they fixed everything else– they
made sure the “house” (coporations) would always win.
Barbara, how great to be in touch this way across the country.
You will never be the person with ALS, as you were never the woman with breast cancer, you are still and will always be our dear, brave warrior for truth and justice (notice I left out the American Way part).
About Medicare, I remember a few years ago at a breast cancer sharing circle here in the Bronx, a woman breaking down, sobbing because while her metastatic cancer had now qualified her for SSD, her Medicare would not kick in for nearly 2 years. She, a former nursing home worker, was trying to keep paying her COBRA on a credit card, which was hitting its limit and thought she would be soon facing the choice of no health care or homelessness. With all the talk in the last few years about health care reform, I have never heard another person speak of this horrible waiting period for newly disabled people under 65.
I am 62 and fearful that Medicare as we know it will not be there when I hit 65, and that limited retirement resources will not stretch to cover this new, privatized beast.
But I am glad to hear that you are enjoying your life, and still lending your mind, spirit and experience to being of use. This blog is a wonderful idea, and I will pass it on to someone I have done anti-toxics work with for many years who has Parkinsons.
All my best. Marian