HAVA and Tuesday.

October 28, 2010 at 7:54 PM (Uncategorized) (, , , , , )

I was told by a stranger, a gentleman I don’t know awhile back that I need to save the government money, and just off myself (because of being on disability.) I’m glad I wasn’t feeling vulnerable that day…or who knows what would have gone down…I said, “Well, sir, if you become a quadriplegic in an auto accident, or live to see old age I wonder if your view will change…”

I’d bet that stranger is all for either a temporary government shutdown that some in the Tea Party/GOP have been mumbling about…

Or standing by acting to privatize the above and gambling with it in the stock market….or, perhaps removing it altogether…

I know persons with disabilities or seniors you aren’t directly related to can become de facto invisible in legislative wrangling, political discourse or the public sphere…

I’d hope it does cross your mind, just enough to be one of the many reasons to vote vote vote.

… if anyone has physical issues in getting to the polls and haven’t had a response to a local query, check my profile and send me an email with your city and state (and preference of party to contact it you wish) and I’ll get them to email you… and set something up…The Help America Vote Act, HAVA is there to help out once you get to the polls.

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So, they’re thinking of shutting down the government…

October 28, 2010 at 7:48 PM (Uncategorized) ()

If  the Republicans/Tea Party candidates arrive in office, they’d like to shut down the government…I wonder if they consider what that would actually entail…

Halting the military in the midst of war.  Ending any way to check if food is safe to eat by shuttering the USDA that checks our food. Putting the nation’s health at risk by hobbling  the Centers for Disease Control  Affecting the shipping of goods by stalling the  postal service. Emptying Washington DC’s remarkable monuments.  Federal buildings shuttered and federal employees in every state  sent home. Temporarily shuttering The Veterans Administration. (Way to support the troops potential new Congresspeople.)  If it goes on long enough, affecting the ability to obtain student loans for the 2011-2012 schoolyear.

Depriving those over 65 of their income and health insurance  Depriving people with disabilities of the same.  If the (temporary?) loss of these vital supports causes the injury or death of some recipients…

Shutting down the government = an actual death panel…

And, much more that I am unaware of.

If all of these things either cost too much or are perceived as unconstitutional, I submit that before any shutdown, the constitutionality of each of these programs should be brought before the Supreme Court to be clarified, and that the *too expensive* tag should apply, not just to the government, but to recipients of government contracts.

Money is money after all.




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The Medicare Homebound Rule and all this weird new stuff

October 13, 2010 at 1:23 PM (Uncategorized) (, , , , )

So I’ve been told I have been approved for supports in the home.  (What I’ll call Shoes and Showers and Cooking and Cleaning…)

It’s my understanding that I may have to become an employer, I believe I have a care allowance from the state and I have to oversee withholding and payment etc. of the PCA.

They’re supposed to contact me shortly.

And the Medicare homebound rule, which I’ve been following anyway, must now apply to me very strictly or else the lovely powerchair I just got could be taken away….or worse my benefits suspended.

It’s “the chair was  given to you to help you around your home.”  “absences must be infrequent and of short duration.”  Driving, understandably, is an instant no-no.  Thankfully the property here is large with an inside courtyard and even a deli and a restaurant on the property.

Stuff that is allowed:

Church (can’t abridge that religious freedom, you know.)

Medical Appointments (They weren’t even covering “adult day care” for Alzheimers or dementia patients as “allowed” until 2005! WTF)

Occasional family gatherings:

Birthdays, Thanksgiving, Christmas, Memorial Day, Fourth of July and Labor Day.

Weddings, funerals, graduations…also ok. Thank God. I have to try to sing at my cousin’s wedding in June.

Then, there are the things below that are not allowed technically because they don’t fall under the “short duration” wording of the rule:

Movies, plays (unless a family member is in them…) concerts, (This part *kills me.* Just kills me. I haven’t been able to make these much anyway, (I’ve had to head home from movies I like several times in the last two years because of sudden illness…)  but I’d like to be able to try to see one first run film every two months!  (What about Netflix or the library…Yes, I use both, but half the fun of these things is discoursing about the new movies when they come out 😦  )

Sporting events, (No big problem at all there…)

non-absolutely necessary window shopping.

Bookstore or coffee shop crawling. (pout.)

(I won’t have the money to shop for books, or DVD’s…and if I did, I’d do it online anyhow.)

And I suppose dinners out with non-family aren’t permitted either.

(Those are triggers for food I shouldn’t eat anyway, but dinners are always catalysts for great conversations…)
It’s assumed the support person will help me shop for food. I really don’t know how clothes shopping is handled.

They watch a lot.  Don’t doubt it.  They have to be hard***es because of the expense of Medicare and Medicaid.  I get it.  (It amazes me how difficult it is to get onto.  Everyone who says, “lazy” people get on Medicaid…” Wrong. ) I’ve heard of people losing their Medicare over a baseball game, and two stories of wheelchairs being repo’d. No Lie. (of course once I hit 65, this wouldn’t apply to me…)

I think a specific number of cultural or sporting events should be permitted, with friends, (what about people who don’t *have* family, or don’t have family within an hour or so ? Sheesh. ) say six times a year. You use whatever your hobby is, do it as close to home as possible, (likely I’d try,  and miss some anyhow…)

So, I’ll be “holding court” a lot, because of course, family, friends can come to see me without restriction.


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Too much bitterness in the eugenics Kool-Aid

October 1, 2010 at 8:00 AM (Uncategorized) (, , , , , )

From Clair Lewis‘ blog via NDY…she’s been tapped to speak with a BBC Sunday morning show…

I am being asked to put forward (sadly only in a sound bite or two, I expect) a human rights focussed secular standpoint on (what I am told will be) a capitalist eugenicist style rant from Virgina Ironside – about women’s moral obligation to terminate babies who will be ‘severely disabled’ and demonising those people who choose not to participate in the UK’s free whole population eugenic screening and termination program.


[A] (free) eugenic screening program [available to the] whole population in the UK is possibly contributing to people thinking it is ok to kill disabled people later in life (ie linking it to a NDY standpoint) because our lives are worse than death itself.

Love the snark.  Snort.  I’ve been closer to death than I cared to be, even difficult lengthy arcs toward death.  I’m still living, but it was close… As a PWD I can say straight up, this is damn hard, but in no way is it “worse than death.”

Hey, maybe that’s one of the reasons I went through all that stuff.  So I would feel I had a legitimate ability to weigh in on that question.

A line from Virginia Ironside’s website reads:

I don’t fear death, but fear getting old, mad, incapable and gaga.

Fearing these things is ok…but using ignorance about disability and fear of aging to moralize at other people is not.

Breaking it down a bit.

The first thing she fears is getting old.  My mother in law had a magnet (one of many) on her fridge that read “Growing old is not for sissies.”  So, yep growing old can range from gradually more inconvenient to downright awful…It happens to everyone that lives long…I get her fear, I’ve got it, but she will have a lot of company going through the same thing…so it isn’t as if her difficulties will begin with isolation…might end there, but won’t begin there. Everyone on the planet would prefer an old age that didn’t degenerate into awful.  and the awful label should only apply if the elder thinks and feels that it’s awful.  Doesn’t mean leaving early is the best option.

Two more words that go together “Mad” in the sense of being unhinged, and “gaga.”

I’m not sure what she means here.  Is she thinking that she’s likely to literally go crazy as she ages, or is she equating crazy with senility or dementia?  Does she fear specific conditions like Alzheimer’s?  Then give it that name and I will nod about the Alzheimer’s and agree with her that that is terrifying to think about. But anything that terrifies is not an automatic reason to leave the planet early.

My same mother in law had severe dementia at the end of her life.  But every day she had a joy, and she could still say at least two words. “Top Down!” because my brother-in-law was her transport person to the adult day care center, and he has a snazzy convertible.  If my cognition has to erode, then by all means leave me the capability to customize my riding-in-a-cool-convertible experience.  She loved it.

And this last weird connection between another thing Ironside fears…becoming “incapable,” and as mentioned by Clair Lewis above, Ironside’s belief that it should be, “women’s moral obligation to terminate babies who will be ‘severely disabled.’

I don’t know what type of Kool-Aid eugenists are drinking, but I never want to find it at *my* grocer thankyouverymuch.

Do doctors have a standard definition of ‘severely disabled?’ No. Can we guess at time of birth what technological or treatment advances could come down the pike and improve this child’s quality of life, and give them more ways than can be seen in utero or at birth to integrate into society, learn, maybe get a job maybe get married?  No, not for every severely disabled child.

Some will move up on the function scale and a parent simply won’t be able to know early on whether they will improve.
I don’t know (she said snarkily) maybe they should be given a chance to progress…

As for being incapable, of course nobody likes deficits of physical function, or worse the more shameful physical and social limiting that is handed down to the impaired person from outside themselves, from society itself…  It’s not my favorite toy, let me tell you. But, adaptability and eventual acceptance of the “new normal,” can and does mitigate some of this.

Some cognitive changes can also be adapted to, for varying spans of time.  Compassionate care, and good advocacy, caregiving, respite care (meaning giving the main caregiver needed breaks now and then) and good doctoring can help both the patient and those who care for them.

This disturbing utilitarian streak by people like this, and Peter Singer, the if you’re disabled, watch out, we may not let you take your first breath argument It’s not just ignorance…It’s this bizarre, dangerous quirk in some people and as much as I dislike and would mouth off at these people, I’m also just shaking my head and want to ask them, “Where in the **** are you getting this? Mars?

I think examining what living with a disability means over an entire span of life would be a good use of Ms. Ironsides time.

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