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The Hell of Medicaid part D
By Mike Reynolds.
Journalists are supposed to be objective, yet it is impossible for me to have any objectivity over the new prescription drug plan offered as part of the new Medicaid part D coverage. As an individual with a disability, I knew this was going to be a bit of an adjustment. The difficulty I experienced, however was totally unpredictable. I feel I did have some benefits; my best friend is a technician at the pharmacy where I get my medications. I have worked in the insurance industry, and I would like to think I advocate for myself effectively. All of these assumptions would be tried in my mind in the month of dealing with part D.
I should preface this with the fact that I did go through a medicine change that was unexpected and unrelated to Medicaid. I am disabled due to Cerebral Palsy (CP) and also have a diagnosis of Panic Disorder. The CP is due to a difficult birth, my Panic Disorder was diagnosed when I was 15, though I know I have had it from a very young age, I think my first panic attack was at 7, which wasn’t considered plausible when I was growing up. I need various durable medical items to get through the day, but since this law did not affect DME, there is no need to really discuss the entirety of those needs.
I tried to get a drug I was out of on December 30th. But there were some complex issues with my doctor’s office, the drug was never refilled, and I found myself without it for a week. This drug was a form of neurontin, which I was taking for post surgical pain and spasms, which had been treated with physical therapy. I had some of my Lexapro, which I had used for years to help with my anxiety issues, in conjunction with a script for klonoprin, a drug I have been on since I was 17.
On January 3, I went to go get my klonoprin refilled. I had my part D card from a company, which, I guess was better than some folks, who did not even receive any information in the mail. I also have since learned that this was the program the government threw me into, without looking at my medicines at all. My friend informed me that no drugs in the same class as my klonoprin were covered by any plan. My neurontin drug was to be picked up at my doctors office as it was also, not covered without some lengthy paper trail. This had already taken a couple of hours, and as I was going home, my friend called my cell phone and let me know that my Medicaid was also somehow cut off. This was more than 2.5 hours after “just trying to get a script refilled.” It took an hour to go to the Human Services office and get my Medicaid re-instated. It was discontinued due to a computer error. I received a letter and was told by the pharmacy I could get my drug refilled in 3 days, luckily I had enough to last those 3 days. I went home exhausted, physically, spiritually and mentally. I am usually a pretty resilient person, but this had left me wiped out. I was left wondering why part D didn’t pay for meds I needed to stay sane. Was I some sort of horrible person for needing the medication? Was it a frivolous drug expense? I went to sleep early, my partner looking in on me, as I seemed a bit distressed.
The same week my body went into crash mode, or just basically deciding it would not cooperate with what a 32-year-old body should do. I had lost bowel control, something that has happened before but after the third day of “oops,” my partner decided that maybe an ER visit would be advisable. I had no idea why my lower half of my body just stopped and said to my brain “He, you thought you had control of us, eh, well, we’re rebelling, and you can’t stop us.”
The ER visit sucked, most do, but this even more so. Instead of my neurological impairment being the main focus, my sexual preference was somehow more important. The ER attending ruled it a bout of diarrhea, a dubious diagnosis because I know my body, it wasn’t that, but after four hours in the ER, I could care less, I just wanted to go home.
I decided to see my general doctor. He was on vacation, but I got a script and the need to try and get on a bowel program seemed to iron things out. My doctor came back and decided to change my anxiety meds to see if a different combo worked. It did, but a bit too well; I was constantly tired and stopped after a couple weeks.
My disability does have some effects on my body that are less than desirable, but after the runaround I have dealt with part D of Medicare, I cannot see how this drug benefit really helps anyone except insurance and drug companies. I mean I am glad I have coverage, and I am glad Maine is one of the states that made sure that there was some stopgap protections. Certainly I cant be the only one with these problems, but after the amount of bureaucracy, I can only imagine how other people who may not have the education or background, or a good friend who knows the benefits from working in a pharmacy and was helpful enough to tell me that my Medicaid was cut off, which probably saved me time by getting it all done in one day. So I guess I’m frustrated, but overall, not hurt by Medicare part D. I just hope they don’t plan on doing this to DME supplies or it will be an enormous headache.
Tuesday, February 07, 2006
Thursday, November 17, 2005
Jerrys orphans in Chicago - With Edited Audio
Orphans in Chicago shut down Lewis
On Wednesday night, 12 disability activists shut down a speech by MDA telethon host Jerry Lewis. While many sites are reported that the disabled protesters may have "walked out and drove home" This is a bulls**t lie. Lewis is extremely RUDE to the folks, and shows even more of his hatred to all things "crip." Yeah, we know who led the protests, no, noone was arrested.Lewis censored himself by refusing to address the crowd, It is rediculous to say he cares about his kids. I think is is really rediculous when Jerry Lewis Fans are so blinded by their own ineptitude to consider MS a "type of MD" and "well my mother used a chair as she was elderly" as definitive knowledge of MD, or having a loved one with MD.
Folks - My best friend had MD, as did over a dozen of my closed friends (THE ONLY downside to crip summer camp.) So do not even try to get into an argument about the merits of criticizing Lewis.
-Background
http://www.geocities.com/chicagoadapt/9-12-jerry.html
http://webhost.bridgew.edu/jhuber/readings/mda_telethon.html
http://www.raggededgemagazine.com/extra/jerrylewis052401.htm
http://www.raggededgemagazine.com/archive/jerry92.htm
http://www.ragged-edge-mag.com/sep97/drnat9.htm
http://www.cripcommentary.com/LewisVsDisabilityRights.html
-September 2, 1990 Parade Magazine Article
http://www.cripcommentary.com/parade.html
-Jerry Lewis Fans
http://www.jerrylewisfans.com/lofiversion/index.php/t349.html
-Alternative to MDA
http://www.mdff.org/
-The Kids Are All Right
http://www.thekidsareallright.org
Wednesday, November 16, 2005
special ed supreme court ruling
I am not sure why this hasn't been on MORE listservs, but the supreme
court ruled on the case monday, against parents of students with disabilities.
http://www.nytimes.com/2005/11/15/politics/15scotus.html?pagewanted=1&th&emc=th
is a NY Times story that details the decision.
This case was argued the same day as the Gonzalez vs. Oregon
case. When I listened in to the hemlock type folks, after the case
was argued, they expected an early decision.
John Roberts did not vote on this case, as his law firm was involved
with the case.
If someone wants to find the ruling - i would definitely like to see
the opinions as they were written...
Mike Reynolds
Friday, October 21, 2005
Why Disability Film Fests ROCK
By Mike Reynolds
Uppity Disability dot net
As a disabled activist, I have been granted a tremendous amount of opportunities that I would never have had I been, dare I say it, able-bodied?
I’ve run a website for over a decade, produced two films and written for a number of publications. I have screened my films at national conferences and had the opportunity to work with amazing, brilliant and committed activists on a wide range of disability, civil rights, and to a lesser extent queer politics and independent media.
But there seems to be a void – The need for a “disability cultural experience.” I don’t mean going to conferences, or reading all the major websites and blogs. I mean a revolution in the way we look at our identity. Other minority cultures have successfully made the leap from marginalization by the mainstream to solid minority identity. One only has to look at the proliferation of film festivals by other minorities to see troubling facts.
There are literally dozens of gay and lesbian film festivals, and as an out gay male, I would like to think that my work would be accepted in the genre, but, really, right now – it doesn’t translate –My first film was not at all geared to a broad audience. My current film is a bit more accessible. But how many disability film festivals are there?
In the US – there are currently 3. Superfest is run out of Berkeley CA, and gets the major hitters like PBS submitting films. That’s not exactly pleasing for a disabled filmmaker with a camera, tripod and video editing software. There is a second festival in New York, but the details escape me at the moment. The final film fest, where an excerpt of my film, Million Dollar Bigot will screen tonight is the Reel Life Film Festival held near Detroit, MI.
A production of Susan Fitzmaurice, it is one of the few outlets for disability specific films to be seen. While there are dozens of say, gay and lesbian film festivals, where directors can sort of garner a buzz before trying to submit to a major independent film fest, like Sundance. Without that cultural structure in place, and with prevailing attitudes in our culture that already marginalize disabled voices, The Reel Life Festival is not only a needed resource, it is literally a lifeline for indie crip filmmakers who do not want “permission” to voice their opinion on video. Reel Life and the other film festivals are providing an essential service – giving disability filmmakers an outlet where a under funded film probably done late at night on the same computer that is also responsible for reporting, writing or research. In other words – the filmmakers who look for tapes on clearance so they can film their masterpiece for the world to see.
Susan Fitzmaurice is a true pioneer and hopefully will be noted as such in the annuals of disability culture. Besides this groundbreaking festival, she has led the dissemation of information for victims of Hurricane Katrina on the Internet. She has recently received an Advocate of the Year award from the World Institute on disability, as well as running numerous other websites, and living a full life. It is folks like Susan Fitzmaurice that gives this crip indie film dork hope that disability perspectives will possibly be less than a marginalized voice in the media.
Uppity Disability dot net
As a disabled activist, I have been granted a tremendous amount of opportunities that I would never have had I been, dare I say it, able-bodied?
I’ve run a website for over a decade, produced two films and written for a number of publications. I have screened my films at national conferences and had the opportunity to work with amazing, brilliant and committed activists on a wide range of disability, civil rights, and to a lesser extent queer politics and independent media.
But there seems to be a void – The need for a “disability cultural experience.” I don’t mean going to conferences, or reading all the major websites and blogs. I mean a revolution in the way we look at our identity. Other minority cultures have successfully made the leap from marginalization by the mainstream to solid minority identity. One only has to look at the proliferation of film festivals by other minorities to see troubling facts.
There are literally dozens of gay and lesbian film festivals, and as an out gay male, I would like to think that my work would be accepted in the genre, but, really, right now – it doesn’t translate –My first film was not at all geared to a broad audience. My current film is a bit more accessible. But how many disability film festivals are there?
In the US – there are currently 3. Superfest is run out of Berkeley CA, and gets the major hitters like PBS submitting films. That’s not exactly pleasing for a disabled filmmaker with a camera, tripod and video editing software. There is a second festival in New York, but the details escape me at the moment. The final film fest, where an excerpt of my film, Million Dollar Bigot will screen tonight is the Reel Life Film Festival held near Detroit, MI.
A production of Susan Fitzmaurice, it is one of the few outlets for disability specific films to be seen. While there are dozens of say, gay and lesbian film festivals, where directors can sort of garner a buzz before trying to submit to a major independent film fest, like Sundance. Without that cultural structure in place, and with prevailing attitudes in our culture that already marginalize disabled voices, The Reel Life Festival is not only a needed resource, it is literally a lifeline for indie crip filmmakers who do not want “permission” to voice their opinion on video. Reel Life and the other film festivals are providing an essential service – giving disability filmmakers an outlet where a under funded film probably done late at night on the same computer that is also responsible for reporting, writing or research. In other words – the filmmakers who look for tapes on clearance so they can film their masterpiece for the world to see.
Susan Fitzmaurice is a true pioneer and hopefully will be noted as such in the annuals of disability culture. Besides this groundbreaking festival, she has led the dissemation of information for victims of Hurricane Katrina on the Internet. She has recently received an Advocate of the Year award from the World Institute on disability, as well as running numerous other websites, and living a full life. It is folks like Susan Fitzmaurice that gives this crip indie film dork hope that disability perspectives will possibly be less than a marginalized voice in the media.
Wednesday, October 05, 2005
supreme court action - a review...and rant...
I received word from Carrie Lucas that the disability activists totally outnumbered the pro death (and that IS what they are, it is rather pathetic, if I do say so.) by about 4 to 1. I listened to compassion in dying's briefing (it was free and advertised) They just seem so full of themselves.
Lets review the facts.
1. The last assisted suicide referendum was lost. After they paid millions of dollars to lobby for it's passage. They have been saying 80 percent of the public favors assisted suicide. Hrmm, I guess it is easy to bullshit the public when they are uninformed. Or Maine doesn't count????
2. The highest suicide rate for individuals in Oregon is elderly men. Hrmm, probably folks who lose bladder control after prostate cancer, have little or underfunded insurance, and dont want to be burdens to their families. Incontinence is never really spoken about in the US. In Europe, there is free medical care, and surprisingly good products for the issue. The final point is that isnt it easier for a doctor to sign a death with dignity script than have to worry about HMO quotas, medicare repayments or insurance payments?
3. Barbara Coombs Lee used to head a HMO. Creepy isnt it? She, Peter Singer and George Felos (Michael Schiavo's attorney) are the creepiest individuals i have seen. that doesn't have much to do with anything. more info soon.
[assisted suicide]
[disability]
Lets review the facts.
1. The last assisted suicide referendum was lost. After they paid millions of dollars to lobby for it's passage. They have been saying 80 percent of the public favors assisted suicide. Hrmm, I guess it is easy to bullshit the public when they are uninformed. Or Maine doesn't count????
2. The highest suicide rate for individuals in Oregon is elderly men. Hrmm, probably folks who lose bladder control after prostate cancer, have little or underfunded insurance, and dont want to be burdens to their families. Incontinence is never really spoken about in the US. In Europe, there is free medical care, and surprisingly good products for the issue. The final point is that isnt it easier for a doctor to sign a death with dignity script than have to worry about HMO quotas, medicare repayments or insurance payments?
3. Barbara Coombs Lee used to head a HMO. Creepy isnt it? She, Peter Singer and George Felos (Michael Schiavo's attorney) are the creepiest individuals i have seen. that doesn't have much to do with anything. more info soon.
[assisted suicide]
[disability]
NDY Day of Action 10-5-05
10-05-05
A Day of Action at the Supreme Court
On a bitterly cold day in January, 1997, hundreds of disability rights
activist plowed upon the Supreme Court to oppose the legalization of assisted
suicide. It was my first national action and it still is one of my favorite
memories. I couldn't make it to DC, (blame fatigue, but also there was a
severe stoppage on amtrak yesterday, so I would have probably missed it
anyway.)
More info soon - check the blogger link up top.
and ck out not dead yet.
looking for our previous update? Wanna buy our
new DVD?
For Disability related infoon ways to help the Katrina victims,
please check out Susan Fitzmaurices website
Tuesday, September 13, 2005
bioethicist uses academic freedom to espouse views against disabled at Bates
a rant by mike r.
I'm tired and frustrated beyond words and well, given i ended up in the hospital yesterday in the AM, was really unable to do anything yesterday.
A professor spoke about euthanasia, it was an "academic" debate. It was at the "Progressive" college campus of Bates College. Peter Singer is not progressive. I've seen him several years ago in portland. i found him eerie then, and well, i was too ill to consider attending last night.
This isnt about abortion or other issues - this man, (and YES, I have read ALL of his works, Just because he has great views on distribution of wealth or animal rights, does not make his points on infanticide any less disturbing.)Yes, we are discussing killing children already born about a month old due to their disability. This is academic freedom? No, in any other forum, it would be considered hate speech, but since Bates allows curricula to continue (an discussion earlier this year where members of the maine bioethics network were called to task for not having a disability perspective, met with the response that i did not "have a medical background" Yes, i guess doing insurance claims, being a personal care attendant for my partner and several other quadripledic men, spending the past decade attending conferences, and medical trainings and written a film about end of life decisions, produced a movie about the assisted suicide referendum, spoke at events and written nationallly published articles, doesn't really give me ANY medical experience,)
Why are we so quick to jump aboard a referendum campaign that most g/l/b/t/q folks i speak with find to be irrelevent, if not even setting the movement back in time. Without equal marriage rights, the referendum is nothing more than a compromise that the governor has conjoured up with a group of STRAIGHT ACTING upper class gay men and lesbians to address their needs.
The referendum does nothing to protect me - today, i have more solid ground to stand on legally, given the fair housing act wording or marital status? Why change something that for all legal purposes, doesnt need changing.
The referendum is not going to change the fear two men have walking together in certain rural parts of the state. the referendum wont make homophobia go away, or lessen the likely hood of hate crimes against gays and lesbians. I know, i've been threatened with physical violence for the t-shirt i wore once.
Why do we focus on the media hyped oppression, but not the speeches of a man who has been the basis for animal liberation terrorism? Why arent we looking at dafur? and the history in Rwanda, or Somalia, so we dont repeat the same mistakes, or have a more meaningful discussion about the problems of africa be more than "well bob geldof told me that it is all the debt..." It is that - but it is sooooooo much more. I would love a native african perspective on that. I think that would be a better use of resources.
I'm just a radical queer crip, who spends too much time worrying about katrina victims - producing documentaries and social justice and civil rights stuff done.
what do i know...
not a slam, just something to ponder.
mike r.
*sorry - i don't want comments*
a rant by mike r.
I'm tired and frustrated beyond words and well, given i ended up in the hospital yesterday in the AM, was really unable to do anything yesterday.
A professor spoke about euthanasia, it was an "academic" debate. It was at the "Progressive" college campus of Bates College. Peter Singer is not progressive. I've seen him several years ago in portland. i found him eerie then, and well, i was too ill to consider attending last night.
This isnt about abortion or other issues - this man, (and YES, I have read ALL of his works, Just because he has great views on distribution of wealth or animal rights, does not make his points on infanticide any less disturbing.)Yes, we are discussing killing children already born about a month old due to their disability. This is academic freedom? No, in any other forum, it would be considered hate speech, but since Bates allows curricula to continue (an discussion earlier this year where members of the maine bioethics network were called to task for not having a disability perspective, met with the response that i did not "have a medical background" Yes, i guess doing insurance claims, being a personal care attendant for my partner and several other quadripledic men, spending the past decade attending conferences, and medical trainings and written a film about end of life decisions, produced a movie about the assisted suicide referendum, spoke at events and written nationallly published articles, doesn't really give me ANY medical experience,)
Why are we so quick to jump aboard a referendum campaign that most g/l/b/t/q folks i speak with find to be irrelevent, if not even setting the movement back in time. Without equal marriage rights, the referendum is nothing more than a compromise that the governor has conjoured up with a group of STRAIGHT ACTING upper class gay men and lesbians to address their needs.
The referendum does nothing to protect me - today, i have more solid ground to stand on legally, given the fair housing act wording or marital status? Why change something that for all legal purposes, doesnt need changing.
The referendum is not going to change the fear two men have walking together in certain rural parts of the state. the referendum wont make homophobia go away, or lessen the likely hood of hate crimes against gays and lesbians. I know, i've been threatened with physical violence for the t-shirt i wore once.
Why do we focus on the media hyped oppression, but not the speeches of a man who has been the basis for animal liberation terrorism? Why arent we looking at dafur? and the history in Rwanda, or Somalia, so we dont repeat the same mistakes, or have a more meaningful discussion about the problems of africa be more than "well bob geldof told me that it is all the debt..." It is that - but it is sooooooo much more. I would love a native african perspective on that. I think that would be a better use of resources.
I'm just a radical queer crip, who spends too much time worrying about katrina victims - producing documentaries and social justice and civil rights stuff done.
what do i know...
not a slam, just something to ponder.
mike r.
*sorry - i don't want comments*
Thursday, July 07, 2005
Musings from the depths of the editing room
Hi folks-
After dealing with quite a bit of physical issues, probably brought on by
the panic attacks that have been worse through out the week, it seems the
million dollar bigot dvd is finally taking shape. It is due to be shipped
soon and finally in the hands of custom flix (http://www.customflix.com), a
fairly cool and very indie film-maker friendly distro - it isnt hollywood -
but it's somewhere in California, and really, I dont want a big budget
hollywood picture. Heck - with a minimal budget - I have 2 emmy
awardwinning folks and several of the major players in the disability
rights movement.
I'm thrilled right now - because after lots and lots of editing snafus,
trying to figure what works, i had my "This is really coming together"
moment tonight. I'm scratching some ideas (the south park animated versions
of steve drake, john kelly, and greg smith will have to wait) but some
stuff just really illustrates this entire battle the community went
through. I distinctly remember calling my friend Dave at like 1 am after
missing murderball in DC at the NSCIA summit. It was just so obvisious to
me that the NSCIA summit had soooo much to offer and why not agirtate clint
a little bit more (Interesting info - Eastwood was rumored to show up at
the Maine International Film Festival - well, Eastwood isn't scheduled, but
ummm, some loudmouthed crip kept bugging the festival to get this movie
that i heard about and posted on one of my fave listservs. So ummm,
Murderball is opening the festival next Friday. as Peter Griffith would say
"Freakin Sweet"...
I do make a brief appearence in the film - but only cuz i'm interviewing
folks...Maybe it is crazy to think some thirty something uppity disability
guy can make Eastwood squirm...visibly. That's my goal. I am really glad i
have done a film before - i keep worrying it is too shorty but i know my
biggest problem with the last film (besides too much of me and it being a
kinda obscure topic - i needed a paragraph to explain the topic to folks.
This - it's one sentence...
It isn't done (and i am horrid with predictions...tho i do have it all
proetty much storyboarded - a couple loose ends and stuff to do - hopefully
it be a good production. The list of folks are too long to thank and i am
tired and thought i'd just let you all know it is getting there. as for
copies - i plan to blitz media and disability media, maine media - heck -
why not the NY Times. maybe this will be seen as edgy and the next big
thing - honestly - it is totally wierd because i just keep thinking of this
wierd journey this past decade my website (TEN YEARS THIS MONTH!!!!!) and
how this is like all those previous projects or offshoots - the ones i
thought were gonna be huge - weren't - the ones i thought were just too
funny or wierd or that no one would get - soared. Heck - this was all
prework for an honors thesis - i also had a trip to some off-broadway play
- "Spokeman"* as part of that same thesis...wierd...
It's getting late - and i really want an early start tomorrow...
Mike R.
</rant from a disabled activist geek>
8^)
Saturday, June 25, 2005
Cellactivist
Ok, i can post from my cell. Cool. So i can update stuff and not be near a 'puter ! Webcasting just got easier! - mjr
Friday, June 24, 2005
TN ADAPT Update
ADAPT in TN
Spoke to RandyAlexander a 1/2 an hour ago - he is currently not in the governor's mansion, the cause being the governor's folks would not allow food to be brought in for all the people to last the weekend. 5 people are staying with the food and snacks they have already brought in. Randy stated they were getting a large amount of local media - some national media - not much - and that nashvillepeacejustice.org may have some sort of email listserv. He seemed pretty busy/preoccupied and I told him that I would give him a call tomorrow - maybe talk to the people still in the Governor's Residence.
Spoke to RandyAlexander a 1/2 an hour ago - he is currently not in the governor's mansion, the cause being the governor's folks would not allow food to be brought in for all the people to last the weekend. 5 people are staying with the food and snacks they have already brought in. Randy stated they were getting a large amount of local media - some national media - not much - and that nashvillepeacejustice.org may have some sort of email listserv. He seemed pretty busy/preoccupied and I told him that I would give him a call tomorrow - maybe talk to the people still in the Governor's Residence.
Mike R.
more info
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