Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 It was good to hear you vent and advocate for yourself! Our has just gone into adult services, so her father and I are new at this and guess we'll learn to do these battles, too. But it is so exhausting! She's living in a lovely home with two other " clients " in a small city @ 3 1/2 hrs. from us; we chose the town because it's the site of the MO school for the deaf, and I've never seen so much signing in my life. We had her first adult plan meeting --- only to be told that a day program was too expensive, that travel to a job site would be expensive, and on and on. Andy and I --- and ---- didn't endure the years of separation while K. was at Perkins to have to face this. Something is very much wrong with adult services. As i explore more, I'll share what I learn. I just won't put up with sitting around all day! Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 Keep venting AND vent to those who tell you you are not eligible. As the old saying goes, " its the squeaky wheel which gets the grease! " Hang in there Locke mom to Kiara 14 --- Nieder wrote: > I just feel the need to vent! > > I just get so frusterated with the lack of support > for adults with disabilities! Im 26 now and as soon > as I turned 21 I just got the shaft. My needs dont > change as I become an adult! Today I called my > audiologist because I need a new hearing aid. > Apperently its unlikely I will ge the funding > because Im an adult. What the heck am I supposed to > do?! How do they expect me to properly communicate > once this hearing aid is no longer meeting my needs > at all? I want to learn sign langauge and even have > speech therapy as well, but guess what! Im an adult > so no longer covered for that! I was told to wait > til I was an adult to get my dental work done > (bridge), well Im an adult now, and now I cant get > funding. I dont feel like Im asking for anything > more then what I need. I would also like to have > reconstruction of my typical charge ear and funding > for a fire alarm for the deaf. But nope, not > nessisary according to the government. Its days like > today that I just get so frusterated and feel > completely defeated. It feels like theres more > people that dont care then there are that do. *sigh* > Anyhow, thanks for the venting session! > > Nieder > > [Non-text portions of this message have been > removed] > > ____________________________________________________ Start your day with Yahoo! - make it your home page http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 , I think it's sickening that you are getting this type of treatment from our government known around the world for it's great medical system...there are definitely drawbacks though, to socialized medicine. I wish I had some nugget of advice to help you but we are so far away from where you are that I haven't looked into any of adult programs, etc. I'm also not sure if it's province by province based, either. I know that for children, NB for example has a much better program than NS for coverage of all of Kennedy's needs relating to CHARGE. Is there some sort of disability pension that's available to help you with things like this? I'm sorry I don't have much to offer other than my shoulder... Hugs from the East, Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 , Being from the states, I don't have any ideas or suggestions. After meeting you at the confernce, I have no doubt that you will rise to the occasion and find a way to advocate for yourself to the right people and get your needs met. I am in awe of your accomplishments and skills. I watch and listen to the struggles (as well as triumphs) of the adult CHARGEr's as well as the parents struggles. I am in those transition years with and have so many thoughts, goals as well as worries about the future. I only hope that I have the strength and ability to do as well for as you have done for yourself. I wish you the best in finding a way to get what you need. Sheryl Mom to Mitch 19 & 18 CHARGEr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 : I don't know if I can offer any help, but a cousin of mine is now head of one of the Canadian med schools. What province are you in? (and if I'm way off on country, please excuse me; we've just returned from a long trip). Bill, my cousin, is very much aware of our and a good guy all around. He has a PhD as well as a MD.Let me know where you are. By the way, Andy and I lived in London for a year.Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 : I almost forgot, I'd love an excuse to call Bill and his wife. Just let me know. He had been at McGill (sp?) but is now in the west somewhere. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 Hi Martha, I'm in BC. Anyone that may be able to help with this situation would be most appreciated, thank you! Re: Re: Im just venting! : I don't know if I can offer any help, but a cousin of mine is now head of one of the Canadian med schools. What province are you in? (and if I'm way off on country, please excuse me; we've just returned from a long trip). Bill, my cousin, is very much aware of our and a good guy all around. He has a PhD as well as a MD.Let me know where you are. By the way, Andy and I lived in London for a year.Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 wow christine stupid wel in aus it isnt as great some thingss we get funding for soem dont formula no way and other things to i do get a pension medicare and healthcare but if i didnt have them wed be stuck ellen > > Hi Martha, > > I'm in BC. Anyone that may be able to help with this situation would be > most appreciated, thank you! > > > Re: Re: Im just venting! > > > : I don't know if I can offer any help, but a cousin of mine is > now > head of one of the Canadian med schools. What province are you in? > (and if I'm way off on country, please excuse me; we've just returned from > a long trip). Bill, my cousin, is very much aware of our and a good > guy all around. He has a PhD as well as a MD.Let me know where you > are. By the way, Andy and I lived in London for a year.Martha > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 sorry i didnt reply to this yesterday, just reading it now i wanted to read it properly, im sorry u cant get funding for ur hearing aid that is so stupid, when i turned 21 i still got funding coz i was on a pension, im glad u felt like u could vent here, im not sure how i got my dental work done, i dallways went to the dentist at the childrens hostital hugs Belinda Im just venting! >I just feel the need to vent! > > I just get so frusterated with the lack of support for adults with > disabilities! Im 26 now and as soon as I turned 21 I just got the shaft. > My needs dont change as I become an adult! Today I called my audiologist > because I need a new hearing aid. Apperently its unlikely I will ge the > funding because Im an adult. What the heck am I supposed to do?! How do > they expect me to properly communicate once this hearing aid is no longer > meeting my needs at all? I want to learn sign langauge and even have > speech therapy as well, but guess what! Im an adult so no longer covered > for that! I was told to wait til I was an adult to get my dental work done > (bridge), well Im an adult now, and now I cant get funding. I dont feel > like Im asking for anything more then what I need. I would also like to > have reconstruction of my typical charge ear and funding for a fire alarm > for the deaf. But nope, not nessisary according to the government. Its > days like today that I just get so frusterated and feel completely > defeated. It feels like theres more people that dont care then there are > that do. *sigh* Anyhow, thanks for the venting session! > > Nieder > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2005 Report Share Posted August 1, 2005 - Aubrie is missing teeth in front due to her submucous cleft palate. I will be sure to get those issues addressed before she ages out of the things as an adult! I find it frustrating as a parent to have to be " two-faced " . To some (like her school team), I want to present her in the best light possible so that they will have high expectations and work to achieve her highest potential. For others (like state funding agencies), I need to present the worst-case scenario in order to qualify for whatever. It feels like cheating, but it's not because there's nothing false -- it's just highlighting one or the other side of things. It makes me very uncomfortable and frustrated, but it's the reality of our life. I have a t-shirt with a person who has one side of her face as the wicked witch and the other side as the good witch. That's how I feel much of the time. It's easier as the parent to present one side or the other because I don't change who I am. But -- for you to present yourself as one or the other would be so much harder. When you and Chantelle talked about not getting services when you are able to communicate your own needs, that really hit home. I wish I knew the answer. I hope that recognizing the problem is the first step in finding the answer. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.