*** LOG OPENED: Wed Nov 4 18:01:28 1998 --- Participants: ChanServ (nanook@eskimo.com) disabled Mooooooo (azdse@uswest.net) CindyB LoneWolf haa Driveshaf --- how are you Helen? *** anny1 has joined #disabled-RT hi anny1 hi ok Let's begin meeting now all greetings off Cindy? ok Cindy is typing for me tonight so giver her a second to type intro *** Driveshaf has left #disabled-RT *** Sub-Zer0 has joined #disabled-rt OK, Last week we discussed healthcare in America and the problems we are having This is a continuation of that meeting I wrote to a friend that works with disability issues The following is what she found out for us Judi, Sorry but me and mine are not going to be too much help! We agree that the policy makers need to hear from the consumers about their problems, concerns, and fears about health insurance including Medicare and Medicaid. However, due to the tendency to ignore - your voice needs to be loud. The more folks you can incorporate into your cause the better off you will be! In other words do as we did with HR16, send the word out to anyone that will listen to you, Choose a day that all of you will plaster the offices of Government with your concerns. Try to have enough people sending them e-mails and faxes also telephone calls on this day to tie them up for the day! Hopefully you will have enough persons to overflow into the next day! Your voice needs to be heard, but it must be unignoreable! You will want to inlist the help of other on-line disabled persons! Anything I can do let me know! Sorry I Couldn't Help More Love in Christ Deidra rather discouraging, huh? comments? well she made it a definant point to be loud! something they won't ignore anny? haa? I'm not sure we have the numbers required *** Mooooooo has left irc (Ping timeout for Moooooooedialup123.phnx.uswest.net) what is HR16? I had trouble following the info that was listed here. *** Mooofasa has joined #disabled-rt not sure haa what was the bill you were referring to? Something we need to look up I guess. *** Sub-Zer0 is now known as LordLinux Mi CASA, it's to pay for alternative home care rather than going into a nursing home...for elderly and disbled alike. disabled I don't know about everyone else but Deidra's letter kind of took the wind out of my sails how about a petition with lots and lots of signatures? Just for starts. i didn't see deidras letter. i was not here last week what are some of the key concerns with this group? we discussed the problems with healthcare Did anyone see the letter or do I need to resend? like medicare and medicaid patients not being able to get proper care etc resend it Cindy a little at a time *** LordLinux has left #disabled-rt ok. Judi, Sorry but me and mine are not going to be too much help! We agree that the policy makers need to hear from the consumers about their problems, concerns, and fears about health insurance including Medicare and Medicaid. However, due to the tendency to ignore - your voice needs to be loud. The more folks you can incorporate into your cause the better off you will be! In other words do as we did with HR16, send the word out to anyone that will listen to you, Choose a day that all of you will plaster the offices of Government with your concerns. Try to have enough people sending them e-mails and faxes also telephone calls on this day to tie them up for the day! Hopefully you will have enough persons to overflow into the next day! Your voice needs to be heard, but it must be unignoreable! You will want to inlist the help of other on-line disabled persons! Anything I can do let me know! Sorry I Couldn't Help More Love in Christ Deidra anny last week we heard the horror stories of several people *** CindyB has left irc (Read error to CindyBpm20-s17-tier2.evansville.net: Connection reset by peer) Whw is deidra? who *** CindyB has joined #disabled-rt Deidra is a girl that joined the list for a few days i heard from someone who knows, that individual contacts like e-mail, letters and calls are taken more seriously than petitions Who are our consumers though? Where do we get the numbers, e-mail addresses, etc.. *** judi1 has joined #Disabled-RT sorry server problems me too she works with others in getting bills approved etc for the disabled Can we get needed info fro our doctors or our insurance agents on who to fax or e-mail about the problems and questions we have? from we are the consumers anny healthcare for some of our members has hit rock bottom senator and represenatives are the polocy makers especially for home health care I Deidra from the US? that's what we were discussing anny trying to get the att of the lawmakers yes I have a ghost Moooooo this would of been a great time to get their att. due to the elections *** Camille3 has joined #disabled-RT *** LoneWolf has left irc (Killed Mooofasa ghost) any ideas? If you want to be politically active as a way in trying to make it better, I think you neesd to get in touch with some groups that are actively doing it now...like MI CASA and AARP independent living centers may have specific info on laws good point haa AARP is a big one around here another good point Camille were you here last week? no *** judi1 is now known as LoneWolf Cindy could you fill her in real quick i believe there is something called texas attendant task force also what's that anny? Last week we had a discussion about Health Care issues in the US and in Canada *** atrpilot has joined #disabled-rt and we were trying to come up with a plan on how to get better help from our insurance company's our numbers are going to be small anyway you look at it instead of them setting such low limits on our health care esp Medicaide and Medicare even with the medicaide patience ok should we or should we not draft a letter to send to our representatives? i get mail from them they are for maintaining and increasing attendant care, i havn't been real involved but they are linked to colilition of texans with disabilities could you write them anny and ask for suggestons on how best to make our concerns known? What do you all think of the solution Deidra had about flooding offices with faxes etc Excellent idea i can contact the local independent living center and find out info, be glad to if we aggravate enough, they have to answer sooner or later haa? anny? *** max has joined #disabled-rt atr that would be great anny Yes, what anny is going to do seems like a good route. Thks Anny. yes it is sorry anny missed it i'll find out what i can I don't feel comfortable with the flooding thing personally I know it must be different state to state, so we could all try founding out something in our own state and compare what is your concern wolf finding been on medicare for 22yrs.it has just gotten worse as long as they got us down it will be hard to get up. with the flooding? yea can't do anything wit medicare atr, don't give up, we'll get to the bottom, just trying to figure out how guess its the old big brother thing-don't make em mad-dumb I know not dumb, cautious atr how did it get worse? could get worse, I guess just kept taking benefits away and raising premiums We need to get better informed about issuses and problems before deciding what to do about any of this stuff. I feel strongly that on the attendant care issue and would like to see people get informed and knowledgeable about MICASA. true ok well i will find out how other groups have approched it and get back to our group ok? Its best to go in knowing our stuff I agree okay thks anny. be good anny'Haa could you inform us about MICASA cheap leagal counciling would be good! maybe give us a bit more info about it now? I went to a hearing in D.C. in 1980 begging for spinal cord research money 15 million. They promised us the world,but gave us nothing. wow yes, i'll send info about MICASA..but you can get alot of information and web-sites just by running a search on MICASA. makes me feel wimpy for not wanting to flood offices atr you are on Medicare-can you get a paid attendant? does anyone here have a paid attendant? don't need one can only get 2 catheters per week burns me up bladder infection all the time Nope not me, I've been paying out of pocket for 17 years. but if you did need one could you get one? LW, is in bad enough shape she needs some homehealth care, but because she isn't as elderly as they want her to be, she can't. plus I'm chronic now is that fair? haa I can't afford an attendant most people can't, so they have to suffer if the doc ordered attentant care doesn't medacare pay for part Moofasa, how does WW get her attendant? this is a big issue atr? haa? Well I meant is that i am not on Medicare, nor Medicaid and I won't qualify unti August of 1999. she hires them oh pays out of pocket? i dont know haa, what is the qualifications? I don't understand that haa, I have Medicare A Someone must pay for Wacky to have one, but is he on Medicare? I don't know I talked to Social Secirity about Medicare a,d what I was told, is that Medicare will pay for homecare if you're homebound but it's getting harder and harder to qualify. are you on disability? what are specific concerns? attendant care, home health care anything else. *** Robin-1 has joined #disabled-rt hi all yes last week on person told that she was unable to get meds because her med allowance was used up Yes, I am on long term disabliltiy and social security disability. hmmm ive heard that too haa if you can go out at all likek to dr. they say not homebound i'm concerned about when we need nursing home care who will pay for that yes Anny, I've heard that me too Camille But what if you can go to the doctor, but can't get yourself there and have no one to take you? pardon me is this discussion about healthcare restricted to those in the USA? this person had Medicare and had a $800/yr allowance no Robin, no, all over the country Robin we need ideas-can you share your healthcare system with us Oh, they pay for nursing homecare, but you wind up giving up all your assets and wind up in poverty. yes that I no haa well i use the national health service which is free to all that's what we had to do with my mother in law England? Ireland? UK but now, 800.00 doesn't last 2 months, much less a ear year do you pay into it Robin my mother is in nursing home medicare pays nothing, medicaid is paying ,but you have to be destitute- no home, no savings, nothing. England Scotland Wales Northern Ireland ok that's right atr i think you have to have less than 2,000 in assets to qualify for medicaid in tx then social security will pay for nursing home i have aunt in same condition pilot our ins co has nursing home ins but it is sky high *** Camille3 has left #disabled-RT everyone pays a small proportion of their income to the service regardless of whether they are unemployed or not Why is it the US is suppose to be the land of the free and take care of their people, but the other countries seem to have more going for them with medical help! Robin we have learned that Canada and Aus are the same way *** bayah has joined #disabled-rt why is US having so much trouble with this? is the care sufficient robin? well they are both memebers of the British Commonwealth of nations good got in have I missed anything? anny1 not medicare - medicaid from state not government we're not getting anywhere bayah yea Robin is the care good? there are private medical care systems in this country too atr medicaid is federal monies administered by state i thought people have a choice It is almost 9 LW, should we do the questions? IC which thy wish to use yes Cindy go for it could be anny 1. What other research has been found? LW, I read into the long term health ins which costs an arm and a leg, and they are not going to survive the long term procedure...they'll go bankrupt...they are going out of business....it is just not a good solution to the prob;em.. Which we have none really but if thwey go private it is very expensive *** LordLinux has joined #disabled-rt I agree haa did anyone get any info on what the other countries were doing as far as their healthcare I thought the gal from Austrilia was going to get something to us my mother is in a private nursing home she didn't show expensive Robin? she pays 2000 pounds a month for that Has anyone doen any research at all since the last meeting? done bayah, Robin is telling us about UK close to Aus when she has used up all her capital and has only 8000 pounds left how much is that in dollars? she will return to the public suystem and have her fees paid for her by them one pound equqals 1.61 dollars can she stay in the same place? 1.65 dollar = 1 pound *** CindyB has left irc (Read error to CindyBpm20-s17-tier2.evansville.net: Connection reset by peer) yes she is not moved from there and gets the same treatment as before only the way of paying changes but she has to use up her assets correct *** CindyB has joined #disabled-rt sounds like here that's what a lot of people do here the way us system is messed up socalized health care is looking good to me well anny can we count on you to bring back info? the only difference is apparently the fact that in this country there are a lot of eccentric people how so Robin? in the uSA and Canada they are not tolerated in the same wayas they are here don't understand My input is this...we all need to do our own research...I suggest run a search for MICASA and visi the AARP site...as a start. The attendant care issues are all ove rthe place. ok sounds good this is good Haa you saw the movie Cocoon? yes yes, years ago yes wolf here next week or will it be another topic?? Cocoon? yes. I don't know-what does everyone think? this is a good example of how a nursing home is run in the USA this would not happen here How about half hour of continuing this, then switch topics hate to miss out on all the good info we've been trying so hard to get ok-research first dont worry i am leaving shortly *** Robin-1 has left #disabled-rt no Robin not tonight next week oops *** atrpilot has left #disabled-rt ok with me cindy ok question 2? this is for you haa 2. Haa, would you explain the information you found? *** Mooofasa has left irc (Killed Mooooooo ghost) how about we submit ur research to the mailing list so everyone can see it before meeting? I think she did Cindy good idea I think that it would be good if we got some attention on perhaps some of the talk shows they talk about every minority under the except the minority of being disabled because there much more issues than healthcare most of the public feels that if you are disabled your being taken care of question 3 is for jrt, who isn't with us tonight 3. jrt, could you share what you discovered about Aus healthcare? *** Jax has joined #Disabled-RT sad bayah isn't it i don't think talk show would lend any validity to cause we've heard sme on Aussi care, so I guess we can go to question 4 when you are ready LW I'm gonna research and draft a letter and send it out to you all-maybe anny will tell us who best to send it to *** Jax has left #Disabled-RT I agree with you anny. go Cin 4. As a group, how do we want to do this or do we want to try? sure is but it isnt going to get any better unless a few of us stand up and gripe and collective make our voices heared *** LordLinux is now known as LL-BRB that's what we are trying to find out how to do OK, so as a group, we know we aew going to do research first, then what? lets see if we can get ducks in a row before we march are ok we need to generate a little more interest too Isn't wacky suppose to rough draft a letter? could you guys talk this up with the others? I feel we have touched on at least 20 major issues. Now, which do do we attack first. it is mammoth isn't it? yep what's most urgent? ? i am not familiar with the mailing list for this group how do i post to it basic medical care? home health? Home Attendents? Other? My preference is homecare, like attendant care alternative to nursing home. I think a talk show wpould because the biggest problem or one of the biggest problems that I see is that the non disabled society thinks everything is fine with us the dont know and if we use some sort of the media to get the point accross it might help It might take more than once but we could keep at it so they know we wont go away go to http://www.members/tripod.com/~disabled and sign onto list good idea bayah how would we proceed? get the news in on it, they are a good publicist for sure, and can be very dramatic! what about Paul Harvey? He's a great research person I don't think the non-disabled want to know...they are more concern with is there going to be any Social security bene's for me when I retire... true Cindy could you see if you could find out about Paul Harvey? ok i will talk to my friends in social work and post to list what i find out thanks anny Yes, he is actually online! i agree haa everybody interested in self If the disabled mop up all the money...there ain't gonna be anything left for the non-disabled. bayah know how we could contact a talk show? *** cher has joined #disabled-rt ok lets get all our ducks in a row and spend part of each meeting for a while working on it-ok? I have a good friend and ex teacher who also is a news paper jornalist, she may be able to help good everyone agree? do we really want to go down the talk show road? they tend to make people look like victims depends on which show I'd think *** cher has left irc (cher) true, and those who have to pay out for medicaide who don't use it, can be harsh We can prove that we have poor healthcare we can also bring up that often we are dicriminated against and we cant fight it I myself can prove that we are not treated equally under the law our children with disabilities arent getting the education they deserve most of any monies goes for the normal classrooms housing can be dificult and just because we have the A.D.A. that doesnt mean its carried out in every state ok, last question before we run out of time 5. If so, let's begin composing a letter. I'll turn the floor over to Brian now, who is going to draft the letter for our approval. I agree with anny...the talk-show way is not the way to go. And Bri is away for the night maybe there's more than 1 way though haa public and media attention is good, no one wants to be caught on the spot! I mean bayah might be good at that whereas some of us might do better with legislatures talk shows get attention but not in a productive way is my thought this could be an ongoing thing to keep attn on it we can send articles to magazines though, USA today, Time Magazine, Newspapers...etc.. you know-write letters one month Paul Harvey one month etc we've got to start talking out loud in public as Deidra said, Be loud, be heard we will need contacts as #'s Paul harvey is on the air at least 3 times a day on most radio stations I think each of us should participate in the ways we feel comfortable with true We need to make sure that we are not made out to be the poor me type of vicims but I get so upset that they have some disabled person on who is doing some sort of thing that a normal person takes for granted on doing why cant we be trteated like if we ski and use a body ski to do it whats so special it something you like doing so what why make a big deal out of something that just because yous something diffrent it makes news I've got a big mouth, I'll do anything I'm not a victim, just fighting for rights of people who need it Right on cindy I may be the victim one day and need this myself, might as well start now think of our kids, their kids well we have a lot to think about and look up-Cindy would you check in phoonebook for Indiana for -what am I looking for yes I wil will anny whats that called again in Texas? anny? Helen, what were you mentioning other than AARP? texas attendant task force and colilition of texans with disabilities is that just for Texas MICASA thanks bayah what state are you in? max? *** LL-BRB is now known as LordLinux as far as i know but surely other states have similar groups calif wonder what they would be called? I'm going to find out, If I'm on the phone al day tomorrow maybe you and haa ould check out ca phone books all contact senators office you guys could check with indepepndent living centers in your area maybe that's just it anny-there are none here we livee in the dark ages in Ky where are you Wonder if talking with people in the nursing homes would help, they may have some advise..people we know of course and their families and we can say that we just want equal rights, you know I need 18 month to finis my degree, but the reason that I didnt finish was the loans that Id have to pay back which Iv already paid back the first set of loans I found if I wanted a loan to goto school I could get any I wanted in that way I was treated like everyone else but when It came to get a job to pay back those loans that was the problem because I cant work ar burger king to help pa predicerment *** max has left irc (max) Bayah, what state did you say you're in? Im in Ore, were are suppose to have the Ore health plan but it dont work. ok we've gone over again-thank you everyone I'd like to do some interviews, find out if tey were there by choice, or had to be there because of the healthcare issues we've discussed please submit any info to list good idea Cin great meeting once again which list is that Judi? ok wolf our mailing list disabled okay. Scott you are in a big city-could you make some calls