Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Michele, Glad to hear that your trip to D.C. went so well. I would be very very interested in the information on " Tips for Advocacy. " I may be accompanying a patients advocate here in NY in the next week on either on one or two trips to speak with our legislators/or Senate rep. about supporting a bill that would ultimately help make nursing assistance more obtainable to families like ours with medically fragile children. (I would just be telling them our personal story about our son and about how hard it has been for him and our family over the past two years. I would explain how the nursing shortage and low rate of pay in our county make it difficult or almost impossible to obtain the nursing support services that we all so desperately need. I have never done anything like this and am nervous.....but I just feel so strongly about making people aware of the struggles our fantastic children face on a daily basis and fighting to get or keep the support we need to keep our families together and functioning as well as possible. So, any information you can share that might be would be so appreciated. My email is mpmcd@... Thanks. (mother to two fantastic children. (22months (CHARGE), 5 1/2, wife to Pat) DC advocacy trip > Hi, gang! > > I just got back from my trip to DC for the National Disability Policy > Seminar. Wow. It was awesome! I got great info on advocacy. One > session > was presented by a well-known expert in the field. He gave 10 tips for > advocacy - basically 10 steps to follow in preparing to communicate with a > legislator by phone, email, visit, etc. If anyone is interested in that > info, I can scan and email it. We also met with legislators and > policymakers. All of my meetings were with legislative staffers. The > only > important person I met in person was Judy Biggert from IL. But, let me > tell > you, it was exciting to be there and see how things are done. > > > > The ARC is in every state and is a key advocacy group for people with > disabilities. If you haven't joined the ARC in your state, consider > joining. Or find their website and at least sign up for e-alerts, > newsletters, etc. The ARC US is www.thearc.org <http://www.thearc.org/> . > They can help you know when to reach out to policy makers and on what > issues. Sometimes, there are things happening that will indirectly affect > us but that won't catch our attentions by the headlines. In IL, the ARC > is > also involved in funding available for families to use for conferences (I > use it for every CHARGE conference), internet info for families, lots of > trainings, etc. So it's not just advocacy - it's information and > connections to others who can be of help. > > > > The current budget cuts will be huge for us. We need to be active in > letting legislators in every state know how seriously our families will be > hurt by cuts to Medicaid. They've put us in a hard position. Cuts will > happen somewhere. If they don't impact people with disabilities, they > will > impact other folks who are poor and in need. Ouch. > > > > Best of all, I had a week away from home full of fun and interesting > people, > learning so much (info overload), and great food! DJ took the week as > vacation to be home and play " mom " . He did a fabulous job! I came home > to > a cleaner house than I left. He is awesome. I can't tell you how great > it > feels to know the family can function without me - only on a temporary > basis, of course! > > > > For those of you who know me from the CHARGE conferences, this was > refreshing. The info overload was not full of intense emotion so I > managed > the entire time with no tears! Yippee! > > > > After being gone, Aubrie is definitely " quirky " ! Part of it was that she > had a slumber party last night and was overtired this am. But she could > not > stay on task. Started her Valentines, got about 4 done, moved onto > something else, checked her email, started to practice karate with her > video, that lasted about 1 minute, then wanting a movie. and having a > breakdown when her pen kept falling off the table. She finally fell > asleep > and has been napping for a few hours. > > > > Good news - the mom for the slumber party hasn't seen her for months and > thought her speech was much easier to understand! Those outsider views > can > be so helpful. This was an unsolicited comment so I know it wasn't just > meant to be " nice " . > > > > I've gone thru the emails quick as ever. I'm glad to be back! > > > > Michele W > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 - I will email that info to you. Try not to be too nervous. I have been pleasantly surprised at how welcoming the legislators are of parents. They want to hear from real people. How can they make good decisions without good info? I hope your advocacy efforts result in the bill being passed. Even if it doesn't, don't stop. Keep up your efforts. Sometimes we make very small progress. There are websites that tell the history of the disability movement. They helped me to see how far we've come over time. I have told myself to remember that as time goes on and I get frustrated and jaded when the system doesn't move fast enough (or at all -- or backwards!). Michele W Re: DC advocacy trip Michele, Glad to hear that your trip to D.C. went so well. I would be very very interested in the information on " Tips for Advocacy. " I may be accompanying a patients advocate here in NY in the next week on either on one or two trips to speak with our legislators/or Senate rep. about supporting a bill that would ultimately help make nursing assistance more obtainable to families like ours with medically fragile children. (I would just be telling them our personal story about our son and about how hard it has been for him and our family over the past two years. I would explain how the nursing shortage and low rate of pay in our county make it difficult or almost impossible to obtain the nursing support services that we all so desperately need. I have never done anything like this and am nervous.....but I just feel so strongly about making people aware of the struggles our fantastic children face on a daily basis and fighting to get or keep the support we need to keep our families together and functioning as well as possible. So, any information you can share that might be would be so appreciated. My email is mpmcd@... Thanks. (mother to two fantastic children. (22months (CHARGE), 5 1/2, wife to Pat) DC advocacy trip > Hi, gang! > > I just got back from my trip to DC for the National Disability Policy > Seminar. Wow. It was awesome! I got great info on advocacy. One > session > was presented by a well-known expert in the field. He gave 10 tips for > advocacy - basically 10 steps to follow in preparing to communicate with a > legislator by phone, email, visit, etc. If anyone is interested in that > info, I can scan and email it. We also met with legislators and > policymakers. All of my meetings were with legislative staffers. The > only > important person I met in person was Judy Biggert from IL. But, let me > tell > you, it was exciting to be there and see how things are done. > > > > The ARC is in every state and is a key advocacy group for people with > disabilities. If you haven't joined the ARC in your state, consider > joining. Or find their website and at least sign up for e-alerts, > newsletters, etc. The ARC US is www.thearc.org <http://www.thearc.org/> . > They can help you know when to reach out to policy makers and on what > issues. Sometimes, there are things happening that will indirectly affect > us but that won't catch our attentions by the headlines. In IL, the ARC > is > also involved in funding available for families to use for conferences (I > use it for every CHARGE conference), internet info for families, lots of > trainings, etc. So it's not just advocacy - it's information and > connections to others who can be of help. > > > > The current budget cuts will be huge for us. We need to be active in > letting legislators in every state know how seriously our families will be > hurt by cuts to Medicaid. They've put us in a hard position. Cuts will > happen somewhere. If they don't impact people with disabilities, they > will > impact other folks who are poor and in need. Ouch. > > > > Best of all, I had a week away from home full of fun and interesting > people, > learning so much (info overload), and great food! DJ took the week as > vacation to be home and play " mom " . He did a fabulous job! I came home > to > a cleaner house than I left. He is awesome. I can't tell you how great > it > feels to know the family can function without me - only on a temporary > basis, of course! > > > > For those of you who know me from the CHARGE conferences, this was > refreshing. The info overload was not full of intense emotion so I > managed > the entire time with no tears! Yippee! > > > > After being gone, Aubrie is definitely " quirky " ! Part of it was that she > had a slumber party last night and was overtired this am. But she could > not > stay on task. Started her Valentines, got about 4 done, moved onto > something else, checked her email, started to practice karate with her > video, that lasted about 1 minute, then wanting a movie. and having a > breakdown when her pen kept falling off the table. She finally fell > asleep > and has been napping for a few hours. > > > > Good news - the mom for the slumber party hasn't seen her for months and > thought her speech was much easier to understand! Those outsider views > can > be so helpful. This was an unsolicited comment so I know it wasn't just > meant to be " nice " . > > > > I've gone thru the emails quick as ever. I'm glad to be back! > > > > Michele W > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Michele, Do send me the stuff for D.C. I used to be grand at advocacy but probably need a refresher! Good to have you back! It is awesome to begin to put pieces together, to meet people, etc. --- i.e., I believe that's how I've been able to move forward with 's adult situation. It's sad to me that so much has to do with whom you know, but I think we'd all better realize that. So, I go to congressional teas, etc. I don't necessarily like it all, but it definitely has helped. All that said, I've never made a " life " of that sort of thing and don't think that's required. We all need to keep a notebook of whom we've met, etc. For 's adult stuff, I found information from meetings with various people from many, many years ago. Throw nothing away! Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Martha- Good point that we all need to make connections for our kids' sakes -- even if it's not part of our jobs. Unfortunately, who you know and who knows you does make a difference. Michele W Re: DC advocacy trip Michele, Do send me the stuff for D.C. I used to be grand at advocacy but probably need a refresher! Good to have you back! It is awesome to begin to put pieces together, to meet people, etc. --- i.e., I believe that's how I've been able to move forward with 's adult situation. It's sad to me that so much has to do with whom you know, but I think we'd all better realize that. So, I go to congressional teas, etc. I don't necessarily like it all, but it definitely has helped. All that said, I've never made a " life " of that sort of thing and don't think that's required. We all need to keep a notebook of whom we've met, etc. For 's adult stuff, I found information from meetings with various people from many, many years ago. Throw nothing away! Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 make a file then put in the yahoo group > > Martha- > Good point that we all need to make connections for our kids' sakes -- > even > if it's not part of our jobs. Unfortunately, who you know and who knows > you > does make a difference. > > Michele W > > Re: DC advocacy trip > > Michele, Do send me the stuff for D.C. I used to be grand at advocacy but > probably need a refresher! Good to have you back! It is awesome to > begin to put pieces together, to meet people, etc. --- i.e., I believe > that's > how I've been able to move forward with 's adult situation. It's sad > to > > me that so much has to do with whom you know, but I think we'd all better > realize that. So, I go to congressional teas, etc. I don't necessarily > like > it > all, but it definitely has helped. All that said, I've never made a " life " > of that > sort of thing and don't think that's required. We all need to keep a > notebook of whom we've met, etc. For 's adult stuff, I found > information from meetings with various people from many, many years > ago. Throw nothing away! > Martha > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 I would love the info also. THANKS , mom to Makenna 5 years > > Hi, gang! > > I just got back from my trip to DC for the National Disability Policy > Seminar. Wow. It was awesome! I got great info on advocacy. One session > was presented by a well-known expert in the field. He gave 10 tips for > advocacy - basically 10 steps to follow in preparing to communicate with a > legislator by phone, email, visit, etc. If anyone is interested in that > info, I can scan and email it. We also met with legislators and > policymakers. All of my meetings were with legislative staffers. The only > important person I met in person was Judy Biggert from IL. But, let me tell > you, it was exciting to be there and see how things are done. > > > > The ARC is in every state and is a key advocacy group for people with > disabilities. If you haven't joined the ARC in your state, consider > joining. Or find their website and at least sign up for e-alerts, > newsletters, etc. The ARC US is www.thearc.org <http://www.thearc.org/> . > They can help you know when to reach out to policy makers and on what > issues. Sometimes, there are things happening that will indirectly affect > us but that won't catch our attentions by the headlines. In IL, the ARC is > also involved in funding available for families to use for conferences (I > use it for every CHARGE conference), internet info for families, lots of > trainings, etc. So it's not just advocacy - it's information and > connections to others who can be of help. > > > > The current budget cuts will be huge for us. We need to be active in > letting legislators in every state know how seriously our families will be > hurt by cuts to Medicaid. They've put us in a hard position. Cuts will > happen somewhere. If they don't impact people with disabilities, they will > impact other folks who are poor and in need. Ouch. > > > > Best of all, I had a week away from home full of fun and interesting people, > learning so much (info overload), and great food! DJ took the week as > vacation to be home and play " mom " . He did a fabulous job! I came home to > a cleaner house than I left. He is awesome. I can't tell you how great it > feels to know the family can function without me - only on a temporary > basis, of course! > > > > For those of you who know me from the CHARGE conferences, this was > refreshing. The info overload was not full of intense emotion so I managed > the entire time with no tears! Yippee! > > > > After being gone, Aubrie is definitely " quirky " ! Part of it was that she > had a slumber party last night and was overtired this am. But she could not > stay on task. Started her Valentines, got about 4 done, moved onto > something else, checked her email, started to practice karate with her > video, that lasted about 1 minute, then wanting a movie. and having a > breakdown when her pen kept falling off the table. She finally fell asleep > and has been napping for a few hours. > > > > Good news - the mom for the slumber party hasn't seen her for months and > thought her speech was much easier to understand! Those outsider views can > be so helpful. This was an unsolicited comment so I know it wasn't just > meant to be " nice " . > > > > I've gone thru the emails quick as ever. I'm glad to be back! > > > > Michele W > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Bonnie- Unfortunately, I am such a fledgling that I didn't get any good points in about deafblindness, CHARGE, etc. I was lucky to be there and take it all in. The ARC is focused on developmental disability. This is my " argh " -- all the services out there are for DD -- and DD doesn't fit our kids. They are too smart, basically. It's crazy. The only saving grace for us is that they are working hard in IL to add the entire autism spectrum to the qualifications so Aubrie may qualify that way. There is something about " life skill areas " and being deficient in a certain number of them... but again, I think it's hard for our kids to qualify even when they really need help. I think the problem is that these are not entitlement programs for all people with disabilities. They are given out by the state as they see fit and at whatever funding level they want. So they make the qualifiers restrictive in order to minimize the funding required. Makes me crazy. I'm only a few months into things, so give me more time to get it all figured out. I hope I'm not making you guys crazy with my new " political advocacy " persona. Every step we make in getting more people served thru increased funding and wider, more inclusive qualifiers is a step towards getting our kids covered. I think it's important right now to tell policymakers our stories of how our kids fall thru the cracks, what their needs are, and how those could be met by small changes in the legislative language. They will never make the changes to cover our kids unless they know we are here and struggling. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 good thoughts our governments look to our water needs mroe than us kids id go back to the river anyday like most of dads family would of He came from the country though i must admit he does spend 20 mins in the shower no water conserver there LOL ellen > > Bonnie- > Unfortunately, I am such a fledgling that I didn't get any good points in > about deafblindness, CHARGE, etc. I was lucky to be there and take it all > in. The ARC is focused on developmental disability. This is my " argh " -- > all the services out there are for DD -- and DD doesn't fit our > kids. They > are too smart, basically. It's crazy. The only saving grace for us is > that > they are working hard in IL to add the entire autism spectrum to the > qualifications so Aubrie may qualify that way. There is something about > " life skill areas " and being deficient in a certain number of them... but > again, I think it's hard for our kids to qualify even when they really > need > help. > > I think the problem is that these are not entitlement programs for all > people with disabilities. They are given out by the state as they see fit > and at whatever funding level they want. So they make the qualifiers > restrictive in order to minimize the funding required. Makes me crazy. > > I'm only a few months into things, so give me more time to get it all > figured out. I hope I'm not making you guys crazy with my new " political > advocacy " persona. > > Every step we make in getting more people served thru increased funding > and > wider, more inclusive qualifiers is a step towards getting our kids > covered. > I think it's important right now to tell policymakers our stories of how > our > kids fall thru the cracks, what their needs are, and how those could be > met > by small changes in the legislative language. They will never make the > changes to cover our kids unless they know we are here and struggling. > > Michele W > Aubrie's mom > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 yep ok > > good thoughts our governments look to our water needs mroe than us kids id > go back to the river anyday like most of dads family would of He came from > the country though i must admit he does spend 20 mins in the shower no water > conserver there LOL ellen > > > > > > Bonnie- > > Unfortunately, I am such a fledgling that I didn't get any good points > > in > > about deafblindness, CHARGE, etc. I was lucky to be there and take it > > all > > in. The ARC is focused on developmental disability. This is my " argh " > > -- > > all the services out there are for DD -- and DD doesn't fit our > > kids. They > > are too smart, basically. It's crazy. The only saving grace for us is > > that > > they are working hard in IL to add the entire autism spectrum to the > > qualifications so Aubrie may qualify that way. There is something about > > " life skill areas " and being deficient in a certain number of them... > > but > > again, I think it's hard for our kids to qualify even when they really > > need > > help. > > > > I think the problem is that these are not entitlement programs for all > > people with disabilities. They are given out by the state as they see > > fit > > and at whatever funding level they want. So they make the qualifiers > > restrictive in order to minimize the funding required. Makes me crazy. > > > > I'm only a few months into things, so give me more time to get it all > > figured out. I hope I'm not making you guys crazy with my new > > " political > > advocacy " persona. > > > > Every step we make in getting more people served thru increased funding > > and > > wider, more inclusive qualifiers is a step towards getting our kids > > covered. > > I think it's important right now to tell policymakers our stories of how > > our > > kids fall thru the cracks, what their needs are, and how those could be > > met > > by small changes in the legislative language. They will never make the > > changes to cover our kids unless they know we are here and struggling. > > > > Michele W > > Aubrie's mom > > > > > > > > Membership of this email support groups does not constitute membership > > in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome > > Canada information and membership, please visit > > http://www.chargesyndrome.ca or email info@... . > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > 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.