I must apologize for my lack of recent posts. As some of y'all know, I am co-guardian of my older autistic brother and my sister and I have been working overtime on several time sensitive projects for him. Specifically, we've been raising all kinds of hell to get an assessment of whether my brother needs a five-point harness when he's being driven about town. He lives in a group home with two other roommates and staff members drive him all over the place for all sorts of things.
Background - last year my brother jumped out of a van that was still in motion and onto a busy street. He escaped serious injury, thank the gods, but he could have died. It took well over a month for the "minor" abrasions to heal and his swelling to go down. My brother is also aphasic and he wasn't giving away any details as to why he suddenly had to get out of that van. So, we decided to err on the side of caution and restrict his driving to times when two staff members could be in the van (note - he leapt from the backseat into the front passenger seat and then out the door...and he's fast when he wants to be).
Unfortunately, my brother's current residential funding doesn't allow for two staff members to be about at all times and my brother's travel restrictions have made scheduling and getting to appointments complicated. So, several months ago we started exploring our options and settled on a harness as the best one.
And that's where we ran into trouble. Harnesses are expensive and, contrary to popular belief, a bitch ain't rolling in cash. The state agency responsible for funding stuff like harnesses responded to our request with a one-page blow-off letter that seemed to say that, until my brother made a habit of jumping out of vans still in motion and out into traffic, they were viewing this incident as a one time thing.
Translation - they didn't want to assess whether he needed a harness because they didn't want to have to fund a harness.
Suffice it to say, I felt differently toward the matter and was more than a wee bit unsettled by that response.
So, I've spent the past 6 months at war with several state agencies over whether my brother needs am assessment to see if he needs a harness while driving...and then arguing with state agencies over who should fund that and why...and then arguing with another agency over who would fund it and why.
I'm happy to say that my brother will be getting a formal assessment in preparation for his harness next week.
Yay!
But I'm not sharing this with all y'all because I'm thrilled that my brother will be able to go out into the community again without having to worry about the staff to client ratio.
I'm sharing this because it is a reminder that how a program is set up is as important as whether it is funded appropriately and vice versa. The best programs out there aren't worth crap if they aren't funded - too often folks trying to implement them are placed in the position of not extending services because they can't afford to rather than because the services aren't needed.
And a well funded bad program is just a waste of cash waiting to happen.
As we prepare to embark on healthcare reform...and trust that I'm a huge fan of healthcare reform and the public option...I hope that we the people will keep in mind that "government run program" became a dreaded phrase in a rather predictable fashion - programs were sloppy set up, poorly managed and they began to gradually receive less and less funding and/or to pile bureaucracy upon bureaucracy in an effort to inspire productivity in exchange for funding as if not funding a program or making administrators jump through hoops will somehow punish it into efficiency.
What we do now at the beginning of healthcare reform and, hopefully, the public option will go a long way to setting that reform up for success or failure.
We the people really need healthcare reform to be a success...
...much like I need that harness to keep my brother from jumping out of a moving car into oncoming traffic again.
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this is endemic, everywhere - i just met a new person via LJ who has a daughter with a severe and violent form of autims, and he and his wife have two older children as well, and the teenage daughter has a mild version of the same violent autism - and they can NOT get any help, CPS won't do anything because they don't mistreat their kids, but they have literally asked the state to take away the youngest because they literally cannot care for her anymore (and i mean *literally* are physically incapable of doing it anymore), and the older girl is also really hard to care for - if they only had one, they think they could cope, but both, plus a son who is in between (who thanfully does not have this problem, but is being totally fucked up by the situation).
like, it's so bad that his wife is in the hospital because she had a nervous breakdown because neither of them gets more than 2 hours of sleep at a time EVERY NIGHT...
and it's getting worse. everywhere.
i am really happy that you found a solution (and were able to make agencies USE the solution) because, from where i am seeing, most people can't find anything that really helps.
and it's because the money that *is* there is being totally misused...
for instance, and not at all as serious - i should be on SSI and SSDI - i am disabled, i cannot SIT for more than 10 or 20 minutes at a time. i more than qualify for social securuty disability. but they don't want to give me money, so because i am required by law to list everything that is wrong with me medically, SSI looks and sees that i suffer from depression and PTSD, that these two things are themselves *not* totally disabling, and deny me based on the depression and PTSD. i have *yet* to have a physical evaluation done, and i am applying because of my hip and the thus-far-4-but-at-least-2-more-surgeries. i am on my 4th time applying (apply, appeal, reappeal, start over). SSI and SSDI have the money to pay me - they have the money that i, myself, paid in. (someone is going to tell me how much trouble Social Security is in, as a whole - but that trouble isn't with the program or the money that the program has - it is because other agencies keep taking money OUT of SS, using it like a loan, and those difficulties are future problems, not problems today. unlike unemployment in most states, SS is not currently working in a deficit). they DON'T WANT TO PAY ME - because every dime they give me is a dime that cannot be used to invest and make more money, essentially. and because there are a ton of people on SSI and SSDI who are not totally disabled by the new regulations (from 2000, i think), who cannot be taken off the roles, but because SSI and SSDI are paying for these people who don't qualify, they work really hard to keep people who *do* qualify off, so that the flow isn't messed up by more people recieving SSI and SSDI than qualify. it is somehow better to deny new people who qualify than remove old people who don't qualify - when what SHOULD be happening is they just ADD the new people who qualify, existing claims shouldn't matter to new claims (disclaimer, here - many of the people who get SSI who "don't qualify" don't qualify becauase of stupid fucked up rules, not because they aren't disabled. i am not at all trying to say that those who are newly "not qualified" should be kicked off or anything - i am saying that SSI and SSDI are not dealing well with the facts of the new regulations, and are using people who are receiving aid under the old regulations as a smokescreen to deny new applicants. and it's actually kind of evil, IMO)
there is money. it is being spent by the government in Iraq. and other places. the SSI and SSDI money that i should be recieving is being spent to keep a terrorism watch over the Mall of America or something. instead of where that money is *supposed* to be spent - and this is happening with monies that are earmarked to LOTS of different "social services" - like unemployment, state disability, CPS, etc. the money made by these services (SSI and SSDI and unemployment ALL have money because we ALL pay into them) is being taken by goverments and spent elsewhere.
it's really, really fucked up. i paid a lot of money into SS, SSI and SSDI - and it seems like i will *never* see any of it - not just because they keep denying me *now*, but because, by the time i am old enough to retire, ALL the money from SS will have been leeched away...
and people like your brother, and my friend's daughter, are never going to have a chance to find any sort of "normalcy", let alone something akin to happiness, because of this.
The bureaucratic hell you've gone through for your brother sounds crazy, but certainly commends your care for him.
That's the problem I foresee with the pure public option: It will combine the efficiency of the Post Office with the heart of the IRS. I think that's inevitable. I certainly can't name a public bureaucracy that works well (VA, Medicaid anyone?) A system of state-based coops would probably work better.
The other problem is that it would inevitably become the lowest common denominator as cheap companies forced everyone to the public option as a way of getting health care expenses (see also: GM and Chrysler) off their books. I like my insurance & while Obama may not force me to the public option economics of the marketplace will.
Let me say it another way: Do you think Wal-Mart would provide any coverage whatsoever with a public option available???
I deal with medicaid on a consistent basis and it is much better in relation to providing and paying for mental health services than private insurances. also, people already have an insurance company who hires people to find reasons to deny claims between them and their doctor so that's a false arguement. Also, to quote john stewart (approximately) the post office comes to your house and for 50 cents takes a letter and puts it on a plane for you and gets it where you need it....not too bad
Also, Walmart healthcare is incredibly expensive and most of their employees can't afford it anyway. The point is a public option offers some healthcare vs. the nothing so many people have right now
I 100% support the goal of affordable insurance for everyone, but I don't support 100% of the people on public insurance. Obama may very well not force public insurance on us, but private industry would happily outsource to the US gov't the private insurance they now provide to their employees. A company would be crazy to pay for insurance if the gov't would do it for them. What do you think Obama means when he talks about the cost of health care being a significant factor in the demise of GM & Chrysler? What he's suggesting is that GM & Chrysler--and eventually Ford, Microsoft, General Mills, etc--could eliminate this as an expense BECAUSE THE GOV'T WOULD PAY THE TAB (sorry for the CAPS I don't know the html tag for italicize).
Some companies provide better insurance than the gov't ever would, and 80% of Americans are happy with their health insurance (as am I); I don't want that to change.
Just out of curiosity, but where did you get the 80% figure from; I understood that only approx. 66& of Americans were actually covered - from Michael Moore's Sicko, I admit!
Canada's system also has nothing like the problems that the U.S. system has because we are missing the layer of bureaucracy that you guys have to evaluate claims. Here, it's simple: You go to doctor and show your provincial health care, doctor treats problem, doctor bills government a set amount per procedure. There is no bureaucracy deciding whether your health care should be paid for--it just IS. (Not absolutely everything--drug, dental, and optical coverage tends to be limited, and we have private insurance for that stuff--but doctor and hospital visits are paid for.) And the funny thing is, because we don't have that huge amount of bureaucratic waste in the form of insurance companies, we spend LESS per capita on health care than Americans do (including tax money), and we have substantially higher life expectancies and lower infant mortality than the U.S.
The Canadian system isn't absolutely perfect, but I sure wouldn't trade it for the U.S.'s.
i have an autistic brother who is twelve years old. i watch my parents struggle constantly to get the care he needs, to get the money that they need to buy things (like the harness) that he needs, and it breaks my heart. i know that someday i will be responsible for caring for him, and i hope that i can somehow make enough money to provide for him, but i also hope that healthcare reform will have advanced to a point that he will get what he needs and deserves without an uphill battle every day.
i also have no insurance right now, since i no longer live in my parents' home. i also go to college outside the state of my legal residence, so medicare/medicaid is not an option. these are the reasons i can't wait to see a national public healthcare option. yes, there will be bureaucracy to get past, but i'd rather wade through paperwork to get the surgery or medication i need than simply go without it.
Tangentially: This makes me glad that the autistic self-advocacy movement exists. The more autistic people continue to mobilize to ensure that their needs are met, the more those needs will be met, even for autistic adults (who are currently way under-serviced compared to autistic children). I think it will also be helpful to have a better balance between advocacy from parents of low-functioning autistic kids and advocacy from autistic people themselves. (Note that autistic self-advocates are usually relatively "high-functioning", but not always. Many autistics who cannot work, and even some who cannot speak, can communicate effectively and advocate for themselves through typing via the Internet.)
I hope, too, that eventually ways will be devised for severely autistic people and neurotypical people to communicate with each other well enough that it won't be necessary to physically restrain people such as sharkfu's brother in cars.
Studies need more funding to help stop the onset of Autism. It's a guess that vaccines can increase the chances of Autism but how do you question the use of vaccines? Mercury based preservatives in the vaccines should be outlawed. Huh imagine that! Mercury being injected into your blood stream when your immune system isn't fully developed.
Long Island Basements
I should have known the antivaxers wouldn't be able to leave this one alone.
Thimerosal hasn't been in the vaccines given to children for some time, autism rates have not declined since it was eliminated, and the study that originally made the thimerosal-autism link has been completely discredited. Additionally, most autistic people would take offense at your proposal to "stop the onset of autism".
I have a brother who has a mild form of autism (we're actually not sure because he's never been formally diagnosed). I can definitely appreciate the struggles going on here.
I really hate how our culture tends to be so inconsistent with the idea that life is precious yet at the same time encouraging and rewarding an almost fanatic individualism at the expense of groups and families.
There really is no reason why we cannot have a public and private option for health insurance like many countries do. Will it put a damper on innovation? Likely. But that just means we need to get better at deciding what has value in terms of medical innovation and focus our resources on those things.
Bloated private insurers don't want to have to compete with a government run plan that only needs to break even (basically non-profit). And drug companies fear that a huge government plan will be able to bargain down drug prices, as is the case in just about every other country.
Those who speak so poorly about government run agencies continue to turn a blind eye to whole private sectors such as banking and finance that continue to defraud and pillage their way through our economy on the tax payer's dime. I'd gladly take the post office or the department of public works over those folks...
By having 2 robust health systems, one public and one private, both sectors remain in check. We have plenty of models from which to choose... The gravy train, like all trains before it, can't last forever. The time has come.
That's the problem, no business can compete with "free"--particularly if the fed'l gov't is willing to subsidize benefits equal to private insurance. That's the difference between a public plan & a non-profit plan. A non-profit plan, or a co-op type of plan would be ok.
A non-profit plan, eg Catholic run hospitals, have to compete on the same basis as private plans, whereas a gov't run plan would be subsidized forever. Moreover as employers forced employees to adopt public insurance it would be subsidized at ever increasing cost.
I thought Germany has a pretty good model that uses a non-profit intermediary to run the government system. Patients also have the option to use the private system as well. Someone correct me if this isn't accurate.
Italy has both a private and public system as well, but I will admit that I'm not too familiar with the inner workings.
It seems like many countries operate with this system and the coverage, services and outcomes seem comparable.
Honestly the one thing I can say is that in Italy for example, you see a lot less frills and hassles but the quality of care seems to be comparable. I've heard plenty of anecdotal horror stories in both countries; I've received care in both countries as well as being a provider of services in 1 country.
Some of the facilities are bare bones with respect to the bloated mega hospitals in well-to-do areas of the US. Many of the physicians have very low overhead because they outsource a lot of the expensive equipment to clinics. One can argue that this is less convenient but on the other hand it does cut back a lot of overhead costs for individual docs. In fact many physicians operate like an ideal micro practice does in the US with low overhead, minimal staff and good computer software. Physicians are available after hours too and email has been the norm for some time.
Nationwide, prescriptions are all written on 1 type of standardized format. There is also 1 standard insurance card which eliminates guesswork about what is covered and not covered.
Seriously, this is not rocket science. Insurance companies did this to themselves by not offering value.
Then they bitch and moan that they can't compete??? And the subsidized plan won't be free. People will still have to pay into it. Besides the US government already subsidizes private health care to some extent now by taking out taxes after the deduction.
What happened to the ol' capitalist mantra that choice is better?
Of course this all assumes the greed won't get the better of folks coming up with a new plan though...All bets are off if that happens.