Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Hi - Will you please then set some parameters or describe how discussions about lobbying local, state and national law makers can occur without a discussion of the issue ALL while remaining apolitical? How about this for apolitical discussion: Several months ago, I was shaken to learn that because my son Josh participates in IL Home Based Support Services Program, the State and Federal government have increased access to his privacy - that is, what is beyond the protections provided to a citizen not participating in a Medicaid waiver program. The State of Illinois gave my name and home address to union organizers. And the reason they were able to do so was because I receive a check that comes from the IL HBSSP program. This intrusion on my privacy motivated me to stand up and loudly protest what I felt was the state of IL forcing me to join a union and pay money to a union via dues or fair share. In turn, the union could use the money to exercise their political muscle on policies that I may agree or disagree with. Again, I am shaken to learn that the State of Illinois can force us to drop Josh from our private health insurance if he is to continue participating in the IL HBSSP. I don’t know when or if this happen but this is a part of the new healthcare reform law. I can’t help but to ask: Is it worth it? Is the small monetary support worth all of the heavy, inflexible strings that it comes with? Is it worth giving up our privacy? I am tired of the quarterly visits and the review of our records. I am wondering why Josh has to have an individualized service plan that identifies life goals and documents his progress towards these goals. I don’t have an individualized service plan. I don’t have to report monthly on my progress made towards my life goals. People don't have to sit down at least once a year and examine all aspects of my life - medical, social, familial and discuss it. Some days, I am shaken to realize what we give up because Josh participates in a Medicaid waiver program. Thoughts? Pam What We're About I would echo what Laurie and Ellen have posted about recent posts and add my own comments. We are Illinois Parents of Adults with Developmental Disabilities Unite! and our focus is sharing information, strategies, and commiserating about our state and it's woeful stance and services for those with disabilities. We hope we're a place to vent when our loved one is having problems. We hope we can be a place to come together (remember the " Unite! " part of our name?)to lobby our local, state and national law makers when items come up that affect our loved ones. We want you share news in your part of the state, news of your children and news of your lives--this is not an easy life and we all do the best we can and it's great we can come together to share the ride. We try to be as apolitical as we can be......in Illinois, that can be a hard thing to do! But we must, or we will turn into something other that what Laurie intended IPADDUnite! to be. Partisan politics have no place here--no matter what side you're on. The ONE THING we all agree on is---Illinois SUCKS when it comes to services/programs etc. etc. for those with special needs. I bring up the " Unite! " part of our name again--we are united in our belief we can make it better and be a force in Illinois if WE ARE UNITED IN OUR GOAL TO MAKE IT BETTER FOR OUR CHILDREN. We don't have to agree how to, but we have to trust each other that we all want just about the same thing. I have many, many friends who do not share my political beliefs and I try to avoid talking politics with them. I have always been political, since my days at Illini Girls State when I ran for office and in my time " off list " , I am very political. But politics can be polarizing and being polarized from each other is exactly what we can't afford to be if we want to change this state. So, be nice. I'll get off my soapbox and leave you and have another cup of coffee. We can all agree that coffee and chocolate can fix anything. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Hi - Will you please then set some parameters or describe how discussions about lobbying local, state and national law makers can occur without a discussion of the issue ALL while remaining apolitical? How about this for apolitical discussion: Several months ago, I was shaken to learn that because my son Josh participates in IL Home Based Support Services Program, the State and Federal government have increased access to his privacy - that is, what is beyond the protections provided to a citizen not participating in a Medicaid waiver program. The State of Illinois gave my name and home address to union organizers. And the reason they were able to do so was because I receive a check that comes from the IL HBSSP program. This intrusion on my privacy motivated me to stand up and loudly protest what I felt was the state of IL forcing me to join a union and pay money to a union via dues or fair share. In turn, the union could use the money to exercise their political muscle on policies that I may agree or disagree with. Again, I am shaken to learn that the State of Illinois can force us to drop Josh from our private health insurance if he is to continue participating in the IL HBSSP. I don’t know when or if this happen but this is a part of the new healthcare reform law. I can’t help but to ask: Is it worth it? Is the small monetary support worth all of the heavy, inflexible strings that it comes with? Is it worth giving up our privacy? I am tired of the quarterly visits and the review of our records. I am wondering why Josh has to have an individualized service plan that identifies life goals and documents his progress towards these goals. I don’t have an individualized service plan. I don’t have to report monthly on my progress made towards my life goals. People don't have to sit down at least once a year and examine all aspects of my life - medical, social, familial and discuss it. Some days, I am shaken to realize what we give up because Josh participates in a Medicaid waiver program. Thoughts? Pam What We're About I would echo what Laurie and Ellen have posted about recent posts and add my own comments. We are Illinois Parents of Adults with Developmental Disabilities Unite! and our focus is sharing information, strategies, and commiserating about our state and it's woeful stance and services for those with disabilities. We hope we're a place to vent when our loved one is having problems. We hope we can be a place to come together (remember the " Unite! " part of our name?)to lobby our local, state and national law makers when items come up that affect our loved ones. We want you share news in your part of the state, news of your children and news of your lives--this is not an easy life and we all do the best we can and it's great we can come together to share the ride. We try to be as apolitical as we can be......in Illinois, that can be a hard thing to do! But we must, or we will turn into something other that what Laurie intended IPADDUnite! to be. Partisan politics have no place here--no matter what side you're on. The ONE THING we all agree on is---Illinois SUCKS when it comes to services/programs etc. etc. for those with special needs. I bring up the " Unite! " part of our name again--we are united in our belief we can make it better and be a force in Illinois if WE ARE UNITED IN OUR GOAL TO MAKE IT BETTER FOR OUR CHILDREN. We don't have to agree how to, but we have to trust each other that we all want just about the same thing. I have many, many friends who do not share my political beliefs and I try to avoid talking politics with them. I have always been political, since my days at Illini Girls State when I ran for office and in my time " off list " , I am very political. But politics can be polarizing and being polarized from each other is exactly what we can't afford to be if we want to change this state. So, be nice. I'll get off my soapbox and leave you and have another cup of coffee. We can all agree that coffee and chocolate can fix anything. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 So far, Pam, I have found nothing in your posts that I would consider to fall under what the moderators have been discussing. As far as the privacy thing. To receive my home based support, I will participate in the required 6 home visits a year. I'd gladly sign any petition or write a letter that would change that to maybe 1 - 6 visits, based on the individual's needs and his/her home life. As far as selling your name to an union, I agree with you 100%. That is indeed an invasion of privacy. Joining either of the two unions presented offer NOTHING to help our loved ones, it only serves to put more money in the unions' bank accounts. Since I use Clearbrook for my services, I did not get contacted and believe me if those <insert cuss words here> called me on the phone or showed up at my doorstep, I can guarantee by the time I'm through with them, they wouldn't want me. I would also contact our local police because in our village, a permit is required to solicit in the homes. > > > > Hi - > > Will you please then set some parameters or describe how discussions about lobbying local, state and national law makers can occur without a discussion of the issue ALL while remaining apolitical? > > > > How about this for apolitical discussion: > > > > Several months ago, I was shaken to learn that because my son Josh participates in IL Home Based Support Services Program, the State and Federal government have increased access to his privacy - that is, what is beyond the protections provided to a citizen not participating in a Medicaid waiver program. > > > > > The State of Illinois gave my name and home address to union organizers. And the reason they were able to do so was because I receive a check that comes from the IL HBSSP program. > > > > This intrusion on my privacy motivated me to stand up and loudly protest what I felt was the state of IL forcing me to join a union and pay money to a union via dues or fair share. In turn, the union could use the money to exercise their political muscle on policies that I may agree or disagree with. > > > > Again, I am shaken to learn that the State of Illinois can force us to drop Josh from our private health insurance if he is to continue participating in the IL HBSSP. I don’t know when or if this happen but this is a part of the new healthcare reform law. > > > > I can’t help but to ask: > > Is it worth it? Is the small monetary support worth all of the heavy, inflexible strings that it comes with? Is it worth giving up our privacy? > > > > I am tired of the quarterly visits and the review of our records. I am wondering why Josh has to have an individualized service plan that identifies life goals and documents his progress towards these goals. I don’t have an individualized service plan. I don’t have to report monthly on my progress made towards my life goals. People don't have to sit down at least once a year and examine all aspects of my life - medical, social, familial and discuss it. > > > > Some days, I am shaken to realize what we give up because Josh participates in a Medicaid waiver program. > > > > Thoughts? > Pam > > What We're About > > > > > > > I would echo what Laurie and Ellen have posted about recent posts and add my own comments. > > We are Illinois Parents of Adults with Developmental Disabilities Unite! and our focus is sharing information, strategies, and commiserating about our state and it's woeful stance and services for those with disabilities. We hope we're a place to vent when our loved one is having problems. We hope we can be a place to come together (remember the " Unite! " part of our name?)to lobby our local, state and national law makers when items come up that affect our loved ones. We want you share news in your part of the state, news of your children and news of your lives--this is not an easy life and we all do the best we can and it's great we can come together to share the ride. > > We try to be as apolitical as we can be......in Illinois, that can be a hard thing to do! But we must, or we will turn into something other that what Laurie intended IPADDUnite! to be. Partisan politics have no place here--no matter what side you're on. > > The ONE THING we all agree on is---Illinois SUCKS when it comes to services/programs etc. etc. for those with special needs. I bring up the " Unite! " part of our name again--we are united in our belief we can make it better and be a force in Illinois if WE ARE UNITED IN OUR GOAL TO MAKE IT BETTER FOR OUR CHILDREN. We don't have to agree how to, but we have to trust each other that we all want just about the same thing. > > I have many, many friends who do not share my political beliefs and I try to avoid talking politics with them. I have always been political, since my days at Illini Girls State when I ran for office and in my time " off list " , I am very political. But politics can be polarizing and being polarized from each other is exactly what we can't afford to be if we want to change this state. > > So, be nice. I'll get off my soapbox and leave you and have another cup of coffee. We can all agree that coffee and chocolate can fix anything. > > Marie > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 So far, Pam, I have found nothing in your posts that I would consider to fall under what the moderators have been discussing. As far as the privacy thing. To receive my home based support, I will participate in the required 6 home visits a year. I'd gladly sign any petition or write a letter that would change that to maybe 1 - 6 visits, based on the individual's needs and his/her home life. As far as selling your name to an union, I agree with you 100%. That is indeed an invasion of privacy. Joining either of the two unions presented offer NOTHING to help our loved ones, it only serves to put more money in the unions' bank accounts. Since I use Clearbrook for my services, I did not get contacted and believe me if those <insert cuss words here> called me on the phone or showed up at my doorstep, I can guarantee by the time I'm through with them, they wouldn't want me. I would also contact our local police because in our village, a permit is required to solicit in the homes. > > > > Hi - > > Will you please then set some parameters or describe how discussions about lobbying local, state and national law makers can occur without a discussion of the issue ALL while remaining apolitical? > > > > How about this for apolitical discussion: > > > > Several months ago, I was shaken to learn that because my son Josh participates in IL Home Based Support Services Program, the State and Federal government have increased access to his privacy - that is, what is beyond the protections provided to a citizen not participating in a Medicaid waiver program. > > > > > The State of Illinois gave my name and home address to union organizers. And the reason they were able to do so was because I receive a check that comes from the IL HBSSP program. > > > > This intrusion on my privacy motivated me to stand up and loudly protest what I felt was the state of IL forcing me to join a union and pay money to a union via dues or fair share. In turn, the union could use the money to exercise their political muscle on policies that I may agree or disagree with. > > > > Again, I am shaken to learn that the State of Illinois can force us to drop Josh from our private health insurance if he is to continue participating in the IL HBSSP. I don’t know when or if this happen but this is a part of the new healthcare reform law. > > > > I can’t help but to ask: > > Is it worth it? Is the small monetary support worth all of the heavy, inflexible strings that it comes with? Is it worth giving up our privacy? > > > > I am tired of the quarterly visits and the review of our records. I am wondering why Josh has to have an individualized service plan that identifies life goals and documents his progress towards these goals. I don’t have an individualized service plan. I don’t have to report monthly on my progress made towards my life goals. People don't have to sit down at least once a year and examine all aspects of my life - medical, social, familial and discuss it. > > > > Some days, I am shaken to realize what we give up because Josh participates in a Medicaid waiver program. > > > > Thoughts? > Pam > > What We're About > > > > > > > I would echo what Laurie and Ellen have posted about recent posts and add my own comments. > > We are Illinois Parents of Adults with Developmental Disabilities Unite! and our focus is sharing information, strategies, and commiserating about our state and it's woeful stance and services for those with disabilities. We hope we're a place to vent when our loved one is having problems. We hope we can be a place to come together (remember the " Unite! " part of our name?)to lobby our local, state and national law makers when items come up that affect our loved ones. We want you share news in your part of the state, news of your children and news of your lives--this is not an easy life and we all do the best we can and it's great we can come together to share the ride. > > We try to be as apolitical as we can be......in Illinois, that can be a hard thing to do! But we must, or we will turn into something other that what Laurie intended IPADDUnite! to be. Partisan politics have no place here--no matter what side you're on. > > The ONE THING we all agree on is---Illinois SUCKS when it comes to services/programs etc. etc. for those with special needs. I bring up the " Unite! " part of our name again--we are united in our belief we can make it better and be a force in Illinois if WE ARE UNITED IN OUR GOAL TO MAKE IT BETTER FOR OUR CHILDREN. We don't have to agree how to, but we have to trust each other that we all want just about the same thing. > > I have many, many friends who do not share my political beliefs and I try to avoid talking politics with them. I have always been political, since my days at Illini Girls State when I ran for office and in my time " off list " , I am very political. But politics can be polarizing and being polarized from each other is exactly what we can't afford to be if we want to change this state. > > So, be nice. I'll get off my soapbox and leave you and have another cup of coffee. We can all agree that coffee and chocolate can fix anything. > > Marie > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 We can discuss politics and how it affects our loved ones, but IPADDUnite!, itself, is apolitical. My grandmother used to say " you can disagree but you don't have to be disagreeable " . Several were becoming disagreeable and not really discussing issues pertaining to those with developmental disabilities living in Illinois. Both my other fellow co-moderators commented on this and I felt I should, as well. I think we can all agree personal remarks are not appropriate. I think we want to defuse that here before anything gets out of hand. There is no reason for personal attacks on anyone here, even me. I, myself, have been called names on this list by people who would not seem to be capable of it by many on IPADDUnite! and yet, they did. It is hurtful and not what WE had in mind when we began this in September of 2006. That being said, I also agree with your outrage about giving up our privacy. I've given up my privacy too and it is just as valuable to me as it is to you. I don't like having my life on full view to those who don't have a clue about it. My husband is a physician, I am well educated and yet, I have had people go through my kitchen cabinets, bathrooms and other very personal parts of our home to check to see if everything is okay. That, of course, is just one part of my outrage, but yours are similar to mine. We did, voluntarily, give up some of our privacy when my husband wrote the the first children's book about autism and with my book, as well. But voluntarily giving people a peek into the lives of a family with a disabled child is different from having to in order to receive the pittance we do. Is this worth it? I don't know, I really don't. I do know any ONE view is not the only answer---I just don't know what the answer is. Marie > > > > Hi - > > Will you please then set some parameters or describe how discussions about lobbying local, state and national law makers can occur without a discussion of the issue ALL while remaining apolitical? > > > > How about this for apolitical discussion: > > > > Several months ago, I was shaken to learn that because my son Josh participates in IL Home Based Support Services Program, the State and Federal government have increased access to his privacy - that is, what is beyond the protections provided to a citizen not participating in a Medicaid waiver program. > > > > > The State of Illinois gave my name and home address to union organizers. And the reason they were able to do so was because I receive a check that comes from the IL HBSSP program. > > > > This intrusion on my privacy motivated me to stand up and loudly protest what I felt was the state of IL forcing me to join a union and pay money to a union via dues or fair share. In turn, the union could use the money to exercise their political muscle on policies that I may agree or disagree with. > > > > Again, I am shaken to learn that the State of Illinois can force us to drop Josh from our private health insurance if he is to continue participating in the IL HBSSP. I don’t know when or if this happen but this is a part of the new healthcare reform law. > > > > I can’t help but to ask: > > Is it worth it? Is the small monetary support worth all of the heavy, inflexible strings that it comes with? Is it worth giving up our privacy? > > > > I am tired of the quarterly visits and the review of our records. I am wondering why Josh has to have an individualized service plan that identifies life goals and documents his progress towards these goals. I don’t have an individualized service plan. I don’t have to report monthly on my progress made towards my life goals. People don't have to sit down at least once a year and examine all aspects of my life - medical, social, familial and discuss it. > > > > Some days, I am shaken to realize what we give up because Josh participates in a Medicaid waiver program. > > > > Thoughts? > Pam > > What We're About > > > > > > > I would echo what Laurie and Ellen have posted about recent posts and add my own comments. > > We are Illinois Parents of Adults with Developmental Disabilities Unite! and our focus is sharing information, strategies, and commiserating about our state and it's woeful stance and services for those with disabilities. We hope we're a place to vent when our loved one is having problems. We hope we can be a place to come together (remember the " Unite! " part of our name?)to lobby our local, state and national law makers when items come up that affect our loved ones. We want you share news in your part of the state, news of your children and news of your lives--this is not an easy life and we all do the best we can and it's great we can come together to share the ride. > > We try to be as apolitical as we can be......in Illinois, that can be a hard thing to do! But we must, or we will turn into something other that what Laurie intended IPADDUnite! to be. Partisan politics have no place here--no matter what side you're on. > > The ONE THING we all agree on is---Illinois SUCKS when it comes to services/programs etc. etc. for those with special needs. I bring up the " Unite! " part of our name again--we are united in our belief we can make it better and be a force in Illinois if WE ARE UNITED IN OUR GOAL TO MAKE IT BETTER FOR OUR CHILDREN. We don't have to agree how to, but we have to trust each other that we all want just about the same thing. > > I have many, many friends who do not share my political beliefs and I try to avoid talking politics with them. I have always been political, since my days at Illini Girls State when I ran for office and in my time " off list " , I am very political. But politics can be polarizing and being polarized from each other is exactly what we can't afford to be if we want to change this state. > > So, be nice. I'll get off my soapbox and leave you and have another cup of coffee. We can all agree that coffee and chocolate can fix anything. > > Marie > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 We can discuss politics and how it affects our loved ones, but IPADDUnite!, itself, is apolitical. My grandmother used to say " you can disagree but you don't have to be disagreeable " . Several were becoming disagreeable and not really discussing issues pertaining to those with developmental disabilities living in Illinois. Both my other fellow co-moderators commented on this and I felt I should, as well. I think we can all agree personal remarks are not appropriate. I think we want to defuse that here before anything gets out of hand. There is no reason for personal attacks on anyone here, even me. I, myself, have been called names on this list by people who would not seem to be capable of it by many on IPADDUnite! and yet, they did. It is hurtful and not what WE had in mind when we began this in September of 2006. That being said, I also agree with your outrage about giving up our privacy. I've given up my privacy too and it is just as valuable to me as it is to you. I don't like having my life on full view to those who don't have a clue about it. My husband is a physician, I am well educated and yet, I have had people go through my kitchen cabinets, bathrooms and other very personal parts of our home to check to see if everything is okay. That, of course, is just one part of my outrage, but yours are similar to mine. We did, voluntarily, give up some of our privacy when my husband wrote the the first children's book about autism and with my book, as well. But voluntarily giving people a peek into the lives of a family with a disabled child is different from having to in order to receive the pittance we do. Is this worth it? I don't know, I really don't. I do know any ONE view is not the only answer---I just don't know what the answer is. Marie > > > > Hi - > > Will you please then set some parameters or describe how discussions about lobbying local, state and national law makers can occur without a discussion of the issue ALL while remaining apolitical? > > > > How about this for apolitical discussion: > > > > Several months ago, I was shaken to learn that because my son Josh participates in IL Home Based Support Services Program, the State and Federal government have increased access to his privacy - that is, what is beyond the protections provided to a citizen not participating in a Medicaid waiver program. > > > > > The State of Illinois gave my name and home address to union organizers. And the reason they were able to do so was because I receive a check that comes from the IL HBSSP program. > > > > This intrusion on my privacy motivated me to stand up and loudly protest what I felt was the state of IL forcing me to join a union and pay money to a union via dues or fair share. In turn, the union could use the money to exercise their political muscle on policies that I may agree or disagree with. > > > > Again, I am shaken to learn that the State of Illinois can force us to drop Josh from our private health insurance if he is to continue participating in the IL HBSSP. I don’t know when or if this happen but this is a part of the new healthcare reform law. > > > > I can’t help but to ask: > > Is it worth it? Is the small monetary support worth all of the heavy, inflexible strings that it comes with? Is it worth giving up our privacy? > > > > I am tired of the quarterly visits and the review of our records. I am wondering why Josh has to have an individualized service plan that identifies life goals and documents his progress towards these goals. I don’t have an individualized service plan. I don’t have to report monthly on my progress made towards my life goals. People don't have to sit down at least once a year and examine all aspects of my life - medical, social, familial and discuss it. > > > > Some days, I am shaken to realize what we give up because Josh participates in a Medicaid waiver program. > > > > Thoughts? > Pam > > What We're About > > > > > > > I would echo what Laurie and Ellen have posted about recent posts and add my own comments. > > We are Illinois Parents of Adults with Developmental Disabilities Unite! and our focus is sharing information, strategies, and commiserating about our state and it's woeful stance and services for those with disabilities. We hope we're a place to vent when our loved one is having problems. We hope we can be a place to come together (remember the " Unite! " part of our name?)to lobby our local, state and national law makers when items come up that affect our loved ones. We want you share news in your part of the state, news of your children and news of your lives--this is not an easy life and we all do the best we can and it's great we can come together to share the ride. > > We try to be as apolitical as we can be......in Illinois, that can be a hard thing to do! But we must, or we will turn into something other that what Laurie intended IPADDUnite! to be. Partisan politics have no place here--no matter what side you're on. > > The ONE THING we all agree on is---Illinois SUCKS when it comes to services/programs etc. etc. for those with special needs. I bring up the " Unite! " part of our name again--we are united in our belief we can make it better and be a force in Illinois if WE ARE UNITED IN OUR GOAL TO MAKE IT BETTER FOR OUR CHILDREN. We don't have to agree how to, but we have to trust each other that we all want just about the same thing. > > I have many, many friends who do not share my political beliefs and I try to avoid talking politics with them. I have always been political, since my days at Illini Girls State when I ran for office and in my time " off list " , I am very political. But politics can be polarizing and being polarized from each other is exactly what we can't afford to be if we want to change this state. > > So, be nice. I'll get off my soapbox and leave you and have another cup of coffee. We can all agree that coffee and chocolate can fix anything. > > Marie > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 For what it is worth, here are my thoughts on the personal privacy issue: I did object, quite strenuously, to the intrusion of the state in regard to union efforts. That was and is, above and beyond, in my personal opinion. We did not agree to this when we applied for and received public funds for our loved ones. This feels like a totally different issue than the ISSA/ISC visits. As for the case management, it is part of the agreement, and it is clear and upfront from the git-go...Our loved ones are receiving state/federal money and there is oversight responsibility that I do not find objectionable as a citizen and taxpayer. I have no problem with it, whatsoever. I have found ISSA and ISC folks to be respectful and completely non-intrusive...I am actually happy to share with these " monitors " just how valuable and useful the funding is for Noah and for our family...I feel that it helps to give credence to the benefits of the HBSSP. I also readily acknowledge that I am a pretty open person but I can fully understand how more private-type folks would be uncomfortable with what may seem like a " home invasion " on a quarterly basis. Nevertheless, with all due respect, I think we have far bigger problems in the state then how funding gets monitored. Ellen Ellen Garber Bronfeld egskb@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 For what it is worth, here are my thoughts on the personal privacy issue: I did object, quite strenuously, to the intrusion of the state in regard to union efforts. That was and is, above and beyond, in my personal opinion. We did not agree to this when we applied for and received public funds for our loved ones. This feels like a totally different issue than the ISSA/ISC visits. As for the case management, it is part of the agreement, and it is clear and upfront from the git-go...Our loved ones are receiving state/federal money and there is oversight responsibility that I do not find objectionable as a citizen and taxpayer. I have no problem with it, whatsoever. I have found ISSA and ISC folks to be respectful and completely non-intrusive...I am actually happy to share with these " monitors " just how valuable and useful the funding is for Noah and for our family...I feel that it helps to give credence to the benefits of the HBSSP. I also readily acknowledge that I am a pretty open person but I can fully understand how more private-type folks would be uncomfortable with what may seem like a " home invasion " on a quarterly basis. Nevertheless, with all due respect, I think we have far bigger problems in the state then how funding gets monitored. Ellen Ellen Garber Bronfeld egskb@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 We were lucky, our name was picked for HBSSP after our Governor gave out names and information to Union organizers.  I'm sure that it would have bothered me to be constantly bothered about joing a union.  As far as privacy goes; doesn't bother me at all. My husband and I were Parents for over 15 years. We have lived in the perverbial goldfish bowl since. I have had to have my home checked, nurses visit and be fingerprinted and have background checks etc. Literally, the State would come in and check for cleanliness, measurements, food, and of course the safety of the children that were placed with us.  Never bothered me.  After Ricky was born it just continued. I feel that having the services is more important than my privacy. I can see how it may bother some, but I look at it as check and balance.  I also find it comforting to know that someone is checking on our loved ones who are unable to speak for themselves. Someone needs to make sure that abuse is not occuring. I guess that is a carryover of my Parent days. Bedard Ricky, andra and Tiffy's Mom  “Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.†--Eunice Kennedy Shriver From: pam_harris@... <pam_harris@...> Subject: Re: What We're About IPADDUnite Date: Thursday, March 25, 2010, 6:17 PM  Hi - Will you please then set some parameters or describe how discussions about lobbying local, state and national law makers can occur without a discussion of the issue ALL while remaining apolitical? How about this for apolitical discussion: Several months ago, I was shaken to learn that because my son Josh participates in IL Home Based Support Services Program, the State and Federal government have increased access to his privacy - that is, what is beyond the protections provided to a citizen not participating in a Medicaid waiver program. The State of Illinois gave my name and home address to union organizers. And the reason they were able to do so was because I receive a check that comes from the IL HBSSP program. This intrusion on my privacy motivated me to stand up and loudly protest what I felt was the state of IL forcing me to join a union and pay money to a union via dues or fair share. In turn, the union could use the money to exercise their political muscle on policies that I may agree or disagree with. Again, I am shaken to learn that the State of Illinois can force us to drop Josh from our private health insurance if he is to continue participating in the IL HBSSP. I don’t know when or if this happen but this is a part of the new healthcare reform law. I can’t help but to ask: Is it worth it? Is the small monetary support worth all of the heavy, inflexible strings that it comes with? Is it worth giving up our privacy? I am tired of the quarterly visits and the review of our records. I am wondering why Josh has to have an individualized service plan that identifies life goals and documents his progress towards these goals. I don’t have an individualized service plan. I don’t have to report monthly on my progress made towards my life goals. People don't have to sit down at least once a year and examine all aspects of my life - medical, social, familial and discuss it. Some days, I am shaken to realize what we give up because Josh participates in a Medicaid waiver program. Thoughts? Pam What We're About I would echo what Laurie and Ellen have posted about recent posts and add my own comments. We are Illinois Parents of Adults with Developmental Disabilities Unite! and our focus is sharing information, strategies, and commiserating about our state and it's woeful stance and services for those with disabilities. We hope we're a place to vent when our loved one is having problems. We hope we can be a place to come together (remember the " Unite! " part of our name?)to lobby our local, state and national law makers when items come up that affect our loved ones. We want you share news in your part of the state, news of your children and news of your lives--this is not an easy life and we all do the best we can and it's great we can come together to share the ride. We try to be as apolitical as we can be......in Illinois, that can be a hard thing to do! But we must, or we will turn into something other that what Laurie intended IPADDUnite! to be. Partisan politics have no place here--no matter what side you're on. The ONE THING we all agree on is---Illinois SUCKS when it comes to services/programs etc. etc. for those with special needs. I bring up the " Unite! " part of our name again--we are united in our belief we can make it better and be a force in Illinois if WE ARE UNITED IN OUR GOAL TO MAKE IT BETTER FOR OUR CHILDREN. We don't have to agree how to, but we have to trust each other that we all want just about the same thing. I have many, many friends who do not share my political beliefs and I try to avoid talking politics with them. I have always been political, since my days at Illini Girls State when I ran for office and in my time " off list " , I am very political. But politics can be polarizing and being polarized from each other is exactly what we can't afford to be if we want to change this state. So, be nice. I'll get off my soapbox and leave you and have another cup of coffee. We can all agree that coffee and chocolate can fix anything. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 We were lucky, our name was picked for HBSSP after our Governor gave out names and information to Union organizers.  I'm sure that it would have bothered me to be constantly bothered about joing a union.  As far as privacy goes; doesn't bother me at all. My husband and I were Parents for over 15 years. We have lived in the perverbial goldfish bowl since. I have had to have my home checked, nurses visit and be fingerprinted and have background checks etc. Literally, the State would come in and check for cleanliness, measurements, food, and of course the safety of the children that were placed with us.  Never bothered me.  After Ricky was born it just continued. I feel that having the services is more important than my privacy. I can see how it may bother some, but I look at it as check and balance.  I also find it comforting to know that someone is checking on our loved ones who are unable to speak for themselves. Someone needs to make sure that abuse is not occuring. I guess that is a carryover of my Parent days. Bedard Ricky, andra and Tiffy's Mom  “Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.†--Eunice Kennedy Shriver From: pam_harris@... <pam_harris@...> Subject: Re: What We're About IPADDUnite Date: Thursday, March 25, 2010, 6:17 PM  Hi - Will you please then set some parameters or describe how discussions about lobbying local, state and national law makers can occur without a discussion of the issue ALL while remaining apolitical? How about this for apolitical discussion: Several months ago, I was shaken to learn that because my son Josh participates in IL Home Based Support Services Program, the State and Federal government have increased access to his privacy - that is, what is beyond the protections provided to a citizen not participating in a Medicaid waiver program. The State of Illinois gave my name and home address to union organizers. And the reason they were able to do so was because I receive a check that comes from the IL HBSSP program. This intrusion on my privacy motivated me to stand up and loudly protest what I felt was the state of IL forcing me to join a union and pay money to a union via dues or fair share. In turn, the union could use the money to exercise their political muscle on policies that I may agree or disagree with. Again, I am shaken to learn that the State of Illinois can force us to drop Josh from our private health insurance if he is to continue participating in the IL HBSSP. I don’t know when or if this happen but this is a part of the new healthcare reform law. I can’t help but to ask: Is it worth it? Is the small monetary support worth all of the heavy, inflexible strings that it comes with? Is it worth giving up our privacy? I am tired of the quarterly visits and the review of our records. I am wondering why Josh has to have an individualized service plan that identifies life goals and documents his progress towards these goals. I don’t have an individualized service plan. I don’t have to report monthly on my progress made towards my life goals. People don't have to sit down at least once a year and examine all aspects of my life - medical, social, familial and discuss it. Some days, I am shaken to realize what we give up because Josh participates in a Medicaid waiver program. Thoughts? Pam What We're About I would echo what Laurie and Ellen have posted about recent posts and add my own comments. We are Illinois Parents of Adults with Developmental Disabilities Unite! and our focus is sharing information, strategies, and commiserating about our state and it's woeful stance and services for those with disabilities. We hope we're a place to vent when our loved one is having problems. We hope we can be a place to come together (remember the " Unite! " part of our name?)to lobby our local, state and national law makers when items come up that affect our loved ones. We want you share news in your part of the state, news of your children and news of your lives--this is not an easy life and we all do the best we can and it's great we can come together to share the ride. We try to be as apolitical as we can be......in Illinois, that can be a hard thing to do! But we must, or we will turn into something other that what Laurie intended IPADDUnite! to be. Partisan politics have no place here--no matter what side you're on. The ONE THING we all agree on is---Illinois SUCKS when it comes to services/programs etc. etc. for those with special needs. I bring up the " Unite! " part of our name again--we are united in our belief we can make it better and be a force in Illinois if WE ARE UNITED IN OUR GOAL TO MAKE IT BETTER FOR OUR CHILDREN. We don't have to agree how to, but we have to trust each other that we all want just about the same thing. I have many, many friends who do not share my political beliefs and I try to avoid talking politics with them. I have always been political, since my days at Illini Girls State when I ran for office and in my time " off list " , I am very political. But politics can be polarizing and being polarized from each other is exactly what we can't afford to be if we want to change this state. So, be nice. I'll get off my soapbox and leave you and have another cup of coffee. We can all agree that coffee and chocolate can fix anything. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Dear , I would also agree about a system of checks and balances but.....my son, , is 30 years old and I am just plain tired of it. I am tired and while I appreciate the whole concept of it, I am just tired. We get burned out and numb and......I use to have a set of Post-Its with the following printed on it, " Crisis Du Jour " and I would use them, quite often......some times, reading the paper or watching the news, I think to myself, " now what, what hoops will I have to jump through? " It gets a bit much. And yet, I do it. Anyway, that's my reason for not liking it. Marie > > We were lucky, our name was picked for HBSSP after our Governor gave out names and information to Union organizers.  I'm sure that it would have bothered me to be constantly bothered about joing a union. >  > As far as privacy goes; doesn't bother me at all. My husband and I were Parents for over 15 years. We have lived in the perverbial goldfish bowl since. I have had to have my home checked, nurses visit and be fingerprinted and have background checks etc. Literally, the State would come in and check for cleanliness, measurements, food, and of course the safety of the children that were placed with us.  Never bothered me. >  > After Ricky was born it just continued. I feel that having the services is more important than my privacy. I can see how it may bother some, but I look at it as check and balance. >  > I also find it comforting to know that someone is checking on our loved ones who are unable to speak for themselves. Someone needs to make sure that abuse is not occuring. I guess that is a carryover of my Parent days. > > > Bedard > Ricky, andra and Tiffy's Mom >  > “Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.†--Eunice Kennedy Shriver > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Dear , I would also agree about a system of checks and balances but.....my son, , is 30 years old and I am just plain tired of it. I am tired and while I appreciate the whole concept of it, I am just tired. We get burned out and numb and......I use to have a set of Post-Its with the following printed on it, " Crisis Du Jour " and I would use them, quite often......some times, reading the paper or watching the news, I think to myself, " now what, what hoops will I have to jump through? " It gets a bit much. And yet, I do it. Anyway, that's my reason for not liking it. Marie > > We were lucky, our name was picked for HBSSP after our Governor gave out names and information to Union organizers.  I'm sure that it would have bothered me to be constantly bothered about joing a union. >  > As far as privacy goes; doesn't bother me at all. My husband and I were Parents for over 15 years. We have lived in the perverbial goldfish bowl since. I have had to have my home checked, nurses visit and be fingerprinted and have background checks etc. Literally, the State would come in and check for cleanliness, measurements, food, and of course the safety of the children that were placed with us.  Never bothered me. >  > After Ricky was born it just continued. I feel that having the services is more important than my privacy. I can see how it may bother some, but I look at it as check and balance. >  > I also find it comforting to know that someone is checking on our loved ones who are unable to speak for themselves. Someone needs to make sure that abuse is not occuring. I guess that is a carryover of my Parent days. > > > Bedard > Ricky, andra and Tiffy's Mom >  > “Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.†--Eunice Kennedy Shriver > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 What is HBSSP? Home Based Services something? Shirley  From: pam_harriscomcast (DOT) net <pam_harriscomcast (DOT) net> Subject: Re: What We're About IPADDUnite@gro ups.com Date: Thursday, March 25, 2010, 6:17 PM  Hi - Will you please then set some parameters or describe how discussions about lobbying local, state and national law makers can occur without a discussion of the issue ALL while remaining apolitical? How about this for apolitical discussion: Several months ago, I was shaken to learn that because my son Josh participates in IL Home Based Support Services Program, the State and Federal government have increased access to his privacy - that is, what is beyond the protections provided to a citizen not participating in a Medicaid waiver program. The State of Illinois gave my name and home address to union organizers. And the reason they were able to do so was because I receive a check that comes from the IL HBSSP program. This intrusion on my privacy motivated me to stand up and loudly protest what I felt was the state of IL forcing me to join a union and pay money to a union via dues or fair share. In turn, the union could use the money to exercise their political muscle on policies that I may agree or disagree with. Again, I am shaken to learn that the State of Illinois can force us to drop Josh from our private health insurance if he is to continue participating in the IL HBSSP. I don’t know when or if this happen but this is a part of the new healthcare reform law. I can’t help but to ask: Is it worth it? Is the small monetary support worth all of the heavy, inflexible strings that it comes with? Is it worth giving up our privacy? I am tired of the quarterly visits and the review of our records. I am wondering why Josh has to have an individualized service plan that identifies life goals and documents his progress towards these goals. I don’t have an individualized service plan. I don’t have to report monthly on my progress made towards my life goals. People don't have to sit down at least once a year and examine all aspects of my life - medical, social, familial and discuss it. Some days, I am shaken to realize what we give up because Josh participates in a Medicaid waiver program. Thoughts? Pam What We're About I would echo what Laurie and Ellen have posted about recent posts and add my own comments. We are Illinois Parents of Adults with Developmental Disabilities Unite! and our focus is sharing information, strategies, and commiserating about our state and it's woeful stance and services for those with disabilities. We hope we're a place to vent when our loved one is having problems. We hope we can be a place to come together (remember the " Unite! " part of our name?)to lobby our local, state and national law makers when items come up that affect our loved ones. We want you share news in your part of the state, news of your children and news of your lives--this is not an easy life and we all do the best we can and it's great we can come together to share the ride. We try to be as apolitical as we can be......in Illinois, that can be a hard thing to do! But we must, or we will turn into something other that what Laurie intended IPADDUnite! to be. Partisan politics have no place here--no matter what side you're on. The ONE THING we all agree on is---Illinois SUCKS when it comes to services/programs etc. etc. for those with special needs. I bring up the " Unite! " part of our name again--we are united in our belief we can make it better and be a force in Illinois if WE ARE UNITED IN OUR GOAL TO MAKE IT BETTER FOR OUR CHILDREN. We don't have to agree how to, but we have to trust each other that we all want just about the same thing. I have many, many friends who do not share my political beliefs and I try to avoid talking politics with them. I have always been political, since my days at Illini Girls State when I ran for office and in my time " off list " , I am very political. But politics can be polarizing and being polarized from each other is exactly what we can't afford to be if we want to change this state. So, be nice. I'll get off my soapbox and leave you and have another cup of coffee. We can all agree that coffee and chocolate can fix anything. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 What is HBSSP? Home Based Services something? Shirley  From: pam_harriscomcast (DOT) net <pam_harriscomcast (DOT) net> Subject: Re: What We're About IPADDUnite@gro ups.com Date: Thursday, March 25, 2010, 6:17 PM  Hi - Will you please then set some parameters or describe how discussions about lobbying local, state and national law makers can occur without a discussion of the issue ALL while remaining apolitical? How about this for apolitical discussion: Several months ago, I was shaken to learn that because my son Josh participates in IL Home Based Support Services Program, the State and Federal government have increased access to his privacy - that is, what is beyond the protections provided to a citizen not participating in a Medicaid waiver program. The State of Illinois gave my name and home address to union organizers. And the reason they were able to do so was because I receive a check that comes from the IL HBSSP program. This intrusion on my privacy motivated me to stand up and loudly protest what I felt was the state of IL forcing me to join a union and pay money to a union via dues or fair share. In turn, the union could use the money to exercise their political muscle on policies that I may agree or disagree with. Again, I am shaken to learn that the State of Illinois can force us to drop Josh from our private health insurance if he is to continue participating in the IL HBSSP. I don’t know when or if this happen but this is a part of the new healthcare reform law. I can’t help but to ask: Is it worth it? Is the small monetary support worth all of the heavy, inflexible strings that it comes with? Is it worth giving up our privacy? I am tired of the quarterly visits and the review of our records. I am wondering why Josh has to have an individualized service plan that identifies life goals and documents his progress towards these goals. I don’t have an individualized service plan. I don’t have to report monthly on my progress made towards my life goals. People don't have to sit down at least once a year and examine all aspects of my life - medical, social, familial and discuss it. Some days, I am shaken to realize what we give up because Josh participates in a Medicaid waiver program. Thoughts? Pam What We're About I would echo what Laurie and Ellen have posted about recent posts and add my own comments. We are Illinois Parents of Adults with Developmental Disabilities Unite! and our focus is sharing information, strategies, and commiserating about our state and it's woeful stance and services for those with disabilities. We hope we're a place to vent when our loved one is having problems. We hope we can be a place to come together (remember the " Unite! " part of our name?)to lobby our local, state and national law makers when items come up that affect our loved ones. We want you share news in your part of the state, news of your children and news of your lives--this is not an easy life and we all do the best we can and it's great we can come together to share the ride. We try to be as apolitical as we can be......in Illinois, that can be a hard thing to do! But we must, or we will turn into something other that what Laurie intended IPADDUnite! to be. Partisan politics have no place here--no matter what side you're on. The ONE THING we all agree on is---Illinois SUCKS when it comes to services/programs etc. etc. for those with special needs. I bring up the " Unite! " part of our name again--we are united in our belief we can make it better and be a force in Illinois if WE ARE UNITED IN OUR GOAL TO MAKE IT BETTER FOR OUR CHILDREN. We don't have to agree how to, but we have to trust each other that we all want just about the same thing. I have many, many friends who do not share my political beliefs and I try to avoid talking politics with them. I have always been political, since my days at Illini Girls State when I ran for office and in my time " off list " , I am very political. But politics can be polarizing and being polarized from each other is exactly what we can't afford to be if we want to change this state. So, be nice. I'll get off my soapbox and leave you and have another cup of coffee. We can all agree that coffee and chocolate can fix anything. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Home Based Support Services Program. Bedard Ricky, andra and Tiffy's Mom  Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.†--Eunice Kennedy Shriver From: pam_harriscomcast (DOT) net <pam_harris@ comcast. net> Subject: Re: What We're About IPADDUnite@gro ups.com Date: Thursday, March 25, 2010, 6:17 PM  Hi - Will you please then set some parameters or describe how discussions about lobbying local, state and national law makers can occur without a discussion of the issue ALL while remaining apolitical? How about this for apolitical discussion: Several months ago, I was shaken to learn that because my son Josh participates in IL Home Based Support Services Program, the State and Federal government have increased access to his privacy - that is, what is beyond the protections provided to a citizen not participating in a Medicaid waiver program. The State of Illinois gave my name and home address to union organizers. And the reason they were able to do so was because I receive a check that comes from the IL HBSSP program. This intrusion on my privacy motivated me to stand up and loudly protest what I felt was the state of IL forcing me to join a union and pay money to a union via dues or fair share. In turn, the union could use the money to exercise their political muscle on policies that I may agree or disagree with. Again, I am shaken to learn that the State of Illinois can force us to drop Josh from our private health insurance if he is to continue participating in the IL HBSSP. I don’t know when or if this happen but this is a part of the new healthcare reform law. I can’t help but to ask: Is it worth it? Is the small monetary support worth all of the heavy, inflexible strings that it comes with? Is it worth giving up our privacy? I am tired of the quarterly visits and the review of our records. I am wondering why Josh has to have an individualized service plan that identifies life goals and documents his progress towards these goals. I don’t have an individualized service plan. I don’t have to report monthly on my progress made towards my life goals. People don't have to sit down at least once a year and examine all aspects of my life - medical, social, familial and discuss it. Some days, I am shaken to realize what we give up because Josh participates in a Medicaid waiver program. Thoughts? Pam What We're About I would echo what Laurie and Ellen have posted about recent posts and add my own comments. We are Illinois Parents of Adults with Developmental Disabilities Unite! and our focus is sharing information, strategies, and commiserating about our state and it's woeful stance and services for those with disabilities. We hope we're a place to vent when our loved one is having problems. We hope we can be a place to come together (remember the " Unite! " part of our name?)to lobby our local, state and national law makers when items come up that affect our loved ones. We want you share news in your part of the state, news of your children and news of your lives--this is not an easy life and we all do the best we can and it's great we can come together to share the ride. We try to be as apolitical as we can be......in Illinois, that can be a hard thing to do! But we must, or we will turn into something other that what Laurie intended IPADDUnite! to be. Partisan politics have no place here--no matter what side you're on. The ONE THING we all agree on is---Illinois SUCKS when it comes to services/programs etc. etc. for those with special needs. I bring up the " Unite! " part of our name again--we are united in our belief we can make it better and be a force in Illinois if WE ARE UNITED IN OUR GOAL TO MAKE IT BETTER FOR OUR CHILDREN. We don't have to agree how to, but we have to trust each other that we all want just about the same thing. I have many, many friends who do not share my political beliefs and I try to avoid talking politics with them. I have always been political, since my days at Illini Girls State when I ran for office and in my time " off list " , I am very political. But politics can be polarizing and being polarized from each other is exactly what we can't afford to be if we want to change this state. So, be nice. I'll get off my soapbox and leave you and have another cup of coffee. We can all agree that coffee and chocolate can fix anything. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Home Based Support Services Program. Bedard Ricky, andra and Tiffy's Mom  Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.†--Eunice Kennedy Shriver From: pam_harriscomcast (DOT) net <pam_harris@ comcast. net> Subject: Re: What We're About IPADDUnite@gro ups.com Date: Thursday, March 25, 2010, 6:17 PM  Hi - Will you please then set some parameters or describe how discussions about lobbying local, state and national law makers can occur without a discussion of the issue ALL while remaining apolitical? How about this for apolitical discussion: Several months ago, I was shaken to learn that because my son Josh participates in IL Home Based Support Services Program, the State and Federal government have increased access to his privacy - that is, what is beyond the protections provided to a citizen not participating in a Medicaid waiver program. The State of Illinois gave my name and home address to union organizers. And the reason they were able to do so was because I receive a check that comes from the IL HBSSP program. This intrusion on my privacy motivated me to stand up and loudly protest what I felt was the state of IL forcing me to join a union and pay money to a union via dues or fair share. In turn, the union could use the money to exercise their political muscle on policies that I may agree or disagree with. Again, I am shaken to learn that the State of Illinois can force us to drop Josh from our private health insurance if he is to continue participating in the IL HBSSP. I don’t know when or if this happen but this is a part of the new healthcare reform law. I can’t help but to ask: Is it worth it? Is the small monetary support worth all of the heavy, inflexible strings that it comes with? Is it worth giving up our privacy? I am tired of the quarterly visits and the review of our records. I am wondering why Josh has to have an individualized service plan that identifies life goals and documents his progress towards these goals. I don’t have an individualized service plan. I don’t have to report monthly on my progress made towards my life goals. People don't have to sit down at least once a year and examine all aspects of my life - medical, social, familial and discuss it. Some days, I am shaken to realize what we give up because Josh participates in a Medicaid waiver program. Thoughts? Pam What We're About I would echo what Laurie and Ellen have posted about recent posts and add my own comments. We are Illinois Parents of Adults with Developmental Disabilities Unite! and our focus is sharing information, strategies, and commiserating about our state and it's woeful stance and services for those with disabilities. We hope we're a place to vent when our loved one is having problems. We hope we can be a place to come together (remember the " Unite! " part of our name?)to lobby our local, state and national law makers when items come up that affect our loved ones. We want you share news in your part of the state, news of your children and news of your lives--this is not an easy life and we all do the best we can and it's great we can come together to share the ride. We try to be as apolitical as we can be......in Illinois, that can be a hard thing to do! But we must, or we will turn into something other that what Laurie intended IPADDUnite! to be. Partisan politics have no place here--no matter what side you're on. The ONE THING we all agree on is---Illinois SUCKS when it comes to services/programs etc. etc. for those with special needs. I bring up the " Unite! " part of our name again--we are united in our belief we can make it better and be a force in Illinois if WE ARE UNITED IN OUR GOAL TO MAKE IT BETTER FOR OUR CHILDREN. We don't have to agree how to, but we have to trust each other that we all want just about the same thing. I have many, many friends who do not share my political beliefs and I try to avoid talking politics with them. I have always been political, since my days at Illini Girls State when I ran for office and in my time " off list " , I am very political. But politics can be polarizing and being polarized from each other is exactly what we can't afford to be if we want to change this state. So, be nice. I'll get off my soapbox and leave you and have another cup of coffee. We can all agree that coffee and chocolate can fix anything. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Marie:  Take my word for it; I get tired too. Mine are not as old as your son. I can't imagine how tired I will be down the road. Rick is 18 and has Down syndrome, andra is 15 and has Autism and , is 15 and has Down syndrome, Autism, Heart and Lung issues, physical impairment and hearing impaired. There are days that I just want to stand on my roof and scream. I tell my husband that I am waiting for my engraved invitation to Madden.  Today, I just found out that my andra will not be allowed to attend the neighborhood summer camp that she has attended, and been fully included in,  since she was three years old. Talk about stunned, shocked and devasted. I haven't even told andra yet.  We all feel differently about the  Case Workers, Managers etc coming into our homes and writing up ISP's year after year. It just doesn't bother me. In my case I just have so many other issues to deal with that this one thing rolls off my back.  Bedard Ricky, andra and Tiffy's Mom  “Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.†--Eunice Kennedy Shriver From: teteme55 <teteme@...> Subject: Re: What We're About IPADDUnite Date: Thursday, March 25, 2010, 10:57 PM  Dear , I would also agree about a system of checks and balances but.....my son, , is 30 years old and I am just plain tired of it. I am tired and while I appreciate the whole concept of it, I am just tired. We get burned out and numb and......I use to have a set of Post-Its with the following printed on it, " Crisis Du Jour " and I would use them, quite often......some times, reading the paper or watching the news, I think to myself, " now what, what hoops will I have to jump through? " It gets a bit much. And yet, I do it. Anyway, that's my reason for not liking it. Marie > > We were lucky, our name was picked for HBSSP after our Governor gave out names and information to Union organizers.  I'm sure that it would have bothered me to be constantly bothered about joing a union. >  > As far as privacy goes; doesn't bother me at all. My husband and I were Parents for over 15 years. We have lived in the perverbial goldfish bowl since. I have had to have my home checked, nurses visit and be fingerprinted and have background checks etc. Literally, the State would come in and check for cleanliness, measurements, food, and of course the safety of the children that were placed with us.  Never bothered me. >  > After Ricky was born it just continued. I feel that having the services is more important than my privacy. I can see how it may bother some, but I look at it as check and balance. >  > I also find it comforting to know that someone is checking on our loved ones who are unable to speak for themselves. Someone needs to make sure that abuse is not occuring. I guess that is a carryover of my Parent days. > > > Bedard > Ricky, andra and Tiffy's Mom >  > “Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.†--Eunice Kennedy Shriver > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Marie:  Take my word for it; I get tired too. Mine are not as old as your son. I can't imagine how tired I will be down the road. Rick is 18 and has Down syndrome, andra is 15 and has Autism and , is 15 and has Down syndrome, Autism, Heart and Lung issues, physical impairment and hearing impaired. There are days that I just want to stand on my roof and scream. I tell my husband that I am waiting for my engraved invitation to Madden.  Today, I just found out that my andra will not be allowed to attend the neighborhood summer camp that she has attended, and been fully included in,  since she was three years old. Talk about stunned, shocked and devasted. I haven't even told andra yet.  We all feel differently about the  Case Workers, Managers etc coming into our homes and writing up ISP's year after year. It just doesn't bother me. In my case I just have so many other issues to deal with that this one thing rolls off my back.  Bedard Ricky, andra and Tiffy's Mom  “Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.†--Eunice Kennedy Shriver From: teteme55 <teteme@...> Subject: Re: What We're About IPADDUnite Date: Thursday, March 25, 2010, 10:57 PM  Dear , I would also agree about a system of checks and balances but.....my son, , is 30 years old and I am just plain tired of it. I am tired and while I appreciate the whole concept of it, I am just tired. We get burned out and numb and......I use to have a set of Post-Its with the following printed on it, " Crisis Du Jour " and I would use them, quite often......some times, reading the paper or watching the news, I think to myself, " now what, what hoops will I have to jump through? " It gets a bit much. And yet, I do it. Anyway, that's my reason for not liking it. Marie > > We were lucky, our name was picked for HBSSP after our Governor gave out names and information to Union organizers.  I'm sure that it would have bothered me to be constantly bothered about joing a union. >  > As far as privacy goes; doesn't bother me at all. My husband and I were Parents for over 15 years. We have lived in the perverbial goldfish bowl since. I have had to have my home checked, nurses visit and be fingerprinted and have background checks etc. Literally, the State would come in and check for cleanliness, measurements, food, and of course the safety of the children that were placed with us.  Never bothered me. >  > After Ricky was born it just continued. I feel that having the services is more important than my privacy. I can see how it may bother some, but I look at it as check and balance. >  > I also find it comforting to know that someone is checking on our loved ones who are unable to speak for themselves. Someone needs to make sure that abuse is not occuring. I guess that is a carryover of my Parent days. > > > Bedard > Ricky, andra and Tiffy's Mom >  > “Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.†--Eunice Kennedy Shriver > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 All this time I thought it was only called Home Based Services. And I am getting it for my son. Wow, I thought I knew nothing before, now I really feel clueless. Thank you, Shirley From: pam_harriscomcast (DOT) net <pam_harris@ comcast. net> Subject: Re: What We're About IPADDUnite@gro ups.com Date: Thursday, March 25, 2010, 6:17 PM  Hi - Will you please then set some parameters or describe how discussions about lobbying local, state and national law makers can occur without a discussion of the issue ALL while remaining apolitical? How about this for apolitical discussion: Several months ago, I was shaken to learn that because my son Josh participates in IL Home Based Support Services Program, the State and Federal government have increased access to his privacy - that is, what is beyond the protections provided to a citizen not participating in a Medicaid waiver program. The State of Illinois gave my name and home address to union organizers. And the reason they were able to do so was because I receive a check that comes from the IL HBSSP program. This intrusion on my privacy motivated me to stand up and loudly protest what I felt was the state of IL forcing me to join a union and pay money to a union via dues or fair share. In turn, the union could use the money to exercise their political muscle on policies that I may agree or disagree with. Again, I am shaken to learn that the State of Illinois can force us to drop Josh from our private health insurance if he is to continue participating in the IL HBSSP. I don’t know when or if this happen but this is a part of the new healthcare reform law. I can’t help but to ask: Is it worth it? Is the small monetary support worth all of the heavy, inflexible strings that it comes with? Is it worth giving up our privacy? I am tired of the quarterly visits and the review of our records. I am wondering why Josh has to have an individualized service plan that identifies life goals and documents his progress towards these goals. I don’t have an individualized service plan. I don’t have to report monthly on my progress made towards my life goals. People don't have to sit down at least once a year and examine all aspects of my life - medical, social, familial and discuss it. Some days, I am shaken to realize what we give up because Josh participates in a Medicaid waiver program. Thoughts? Pam What We're About I would echo what Laurie and Ellen have posted about recent posts and add my own comments. We are Illinois Parents of Adults with Developmental Disabilities Unite! and our focus is sharing information, strategies, and commiserating about our state and it's woeful stance and services for those with disabilities. We hope we're a place to vent when our loved one is having problems. We hope we can be a place to come together (remember the " Unite! " part of our name?)to lobby our local, state and national law makers when items come up that affect our loved ones. We want you share news in your part of the state, news of your children and news of your lives--this is not an easy life and we all do the best we can and it's great we can come together to share the ride. We try to be as apolitical as we can be......in Illinois, that can be a hard thing to do! But we must, or we will turn into something other that what Laurie intended IPADDUnite! to be. Partisan politics have no place here--no matter what side you're on. The ONE THING we all agree on is---Illinois SUCKS when it comes to services/programs etc. etc. for those with special needs. I bring up the " Unite! " part of our name again--we are united in our belief we can make it better and be a force in Illinois if WE ARE UNITED IN OUR GOAL TO MAKE IT BETTER FOR OUR CHILDREN. We don't have to agree how to, but we have to trust each other that we all want just about the same thing. I have many, many friends who do not share my political beliefs and I try to avoid talking politics with them. I have always been political, since my days at Illini Girls State when I ran for office and in my time " off list " , I am very political. But politics can be polarizing and being polarized from each other is exactly what we can't afford to be if we want to change this state. So, be nice. I'll get off my soapbox and leave you and have another cup of coffee. We can all agree that coffee and chocolate can fix anything. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 All this time I thought it was only called Home Based Services. And I am getting it for my son. Wow, I thought I knew nothing before, now I really feel clueless. Thank you, Shirley From: pam_harriscomcast (DOT) net <pam_harris@ comcast. net> Subject: Re: What We're About IPADDUnite@gro ups.com Date: Thursday, March 25, 2010, 6:17 PM  Hi - Will you please then set some parameters or describe how discussions about lobbying local, state and national law makers can occur without a discussion of the issue ALL while remaining apolitical? How about this for apolitical discussion: Several months ago, I was shaken to learn that because my son Josh participates in IL Home Based Support Services Program, the State and Federal government have increased access to his privacy - that is, what is beyond the protections provided to a citizen not participating in a Medicaid waiver program. The State of Illinois gave my name and home address to union organizers. And the reason they were able to do so was because I receive a check that comes from the IL HBSSP program. This intrusion on my privacy motivated me to stand up and loudly protest what I felt was the state of IL forcing me to join a union and pay money to a union via dues or fair share. In turn, the union could use the money to exercise their political muscle on policies that I may agree or disagree with. Again, I am shaken to learn that the State of Illinois can force us to drop Josh from our private health insurance if he is to continue participating in the IL HBSSP. I don’t know when or if this happen but this is a part of the new healthcare reform law. I can’t help but to ask: Is it worth it? Is the small monetary support worth all of the heavy, inflexible strings that it comes with? Is it worth giving up our privacy? I am tired of the quarterly visits and the review of our records. I am wondering why Josh has to have an individualized service plan that identifies life goals and documents his progress towards these goals. I don’t have an individualized service plan. I don’t have to report monthly on my progress made towards my life goals. People don't have to sit down at least once a year and examine all aspects of my life - medical, social, familial and discuss it. Some days, I am shaken to realize what we give up because Josh participates in a Medicaid waiver program. Thoughts? Pam What We're About I would echo what Laurie and Ellen have posted about recent posts and add my own comments. We are Illinois Parents of Adults with Developmental Disabilities Unite! and our focus is sharing information, strategies, and commiserating about our state and it's woeful stance and services for those with disabilities. We hope we're a place to vent when our loved one is having problems. We hope we can be a place to come together (remember the " Unite! " part of our name?)to lobby our local, state and national law makers when items come up that affect our loved ones. We want you share news in your part of the state, news of your children and news of your lives--this is not an easy life and we all do the best we can and it's great we can come together to share the ride. We try to be as apolitical as we can be......in Illinois, that can be a hard thing to do! But we must, or we will turn into something other that what Laurie intended IPADDUnite! to be. Partisan politics have no place here--no matter what side you're on. The ONE THING we all agree on is---Illinois SUCKS when it comes to services/programs etc. etc. for those with special needs. I bring up the " Unite! " part of our name again--we are united in our belief we can make it better and be a force in Illinois if WE ARE UNITED IN OUR GOAL TO MAKE IT BETTER FOR OUR CHILDREN. We don't have to agree how to, but we have to trust each other that we all want just about the same thing. I have many, many friends who do not share my political beliefs and I try to avoid talking politics with them. I have always been political, since my days at Illini Girls State when I ran for office and in my time " off list " , I am very political. But politics can be polarizing and being polarized from each other is exactly what we can't afford to be if we want to change this state. So, be nice. I'll get off my soapbox and leave you and have another cup of coffee. We can all agree that coffee and chocolate can fix anything. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 , why can't she attend the summer camp? H. Re: Re: What We're About Marie: ake my word for it; I get tired too. Mine are not as old as your son. I can't magine how tired I will be down the road. Rick is 18 and has Down syndrome, lexandra is 15 and has Autism and , is 15 and has Down syndrome, Autism, eart and Lung issues, physical impairment and hearing impaired. There are days hat I just want to stand on my roof and scream. I tell my husband that I am aiting for my engraved invitation to Madden. oday, I just found out that my andra will not be allowed to attend the eighborhood summer camp that she has attended, and been fully included in, since she was three years old. Talk about stunned, shocked and devasted. I aven't even told andra yet. e all feel differently about the Case Workers, Managers etc coming into our omes and writing up ISP's year after year. It just doesn't bother me. In my ase I just have so many other issues to deal with that this one thing rolls off y back. athy Bedard icky, andra and Tiffy's Mom Every person, regardless of whatever different abilities they may have, can ontribute, can be a source of joy, can beam with pride and love.†--Eunice ennedy Shriver rom: teteme55 <teteme@...> ubject: Re: What We're About o: IPADDUnite ate: Thursday, March 25, 2010, 10:57 PM Dear , I would also agree about a system of checks and balances but.....my son, ussell, is 30 years old and I am just plain tired of it. I am tired and while I ppreciate the whole concept of it, I am just tired. We get burned out and numb and......I use to have a set of Post-Its with the ollowing printed on it, " Crisis Du Jour " and I would use them, quite ften......some times, reading the paper or watching the news, I think to yself, " now what, what hoops will I have to jump through? " It gets a bit much. nd yet, I do it. Anyway, that's my reason for not liking it. Marie We were lucky, our name was picked for HBSSP after our Governor gave out names nd information to Union organizers. I'm sure that it would have bothered me o be constantly bothered about joing a union. As far as privacy goes; doesn't bother me at all. My husband and I were oster Parents for over 15 years. We have lived in the perverbial goldfish bowl ince. I have had to have my home checked, nurses visit and be fingerprinted nd have background checks etc. Literally, the State would come in and check or cleanliness, measurements, food, and of course the safety of the children hat were placed with us. Never bothered me. After Ricky was born it just continued. I feel that having the services is ore important than my privacy. I can see how it may bother some, but I look at t as check and balance. I also find it comforting to know that someone is checking on our loved ones ho are unable to speak for themselves. Someone needs to make sure that abuse s not occuring. I guess that is a carryover of my Parent days. Bedard Ricky, andra and Tiffy's Mom “Every person, regardless of whatever different abilities they may have, can ontribute, can be a source of joy, can beam with pride and love.†--Eunice ennedy Shriver Non-text portions of this message have been removed] ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 , why can't she attend the summer camp? H. Re: Re: What We're About Marie: ake my word for it; I get tired too. Mine are not as old as your son. I can't magine how tired I will be down the road. Rick is 18 and has Down syndrome, lexandra is 15 and has Autism and , is 15 and has Down syndrome, Autism, eart and Lung issues, physical impairment and hearing impaired. There are days hat I just want to stand on my roof and scream. I tell my husband that I am aiting for my engraved invitation to Madden. oday, I just found out that my andra will not be allowed to attend the eighborhood summer camp that she has attended, and been fully included in, since she was three years old. Talk about stunned, shocked and devasted. I aven't even told andra yet. e all feel differently about the Case Workers, Managers etc coming into our omes and writing up ISP's year after year. It just doesn't bother me. In my ase I just have so many other issues to deal with that this one thing rolls off y back. athy Bedard icky, andra and Tiffy's Mom Every person, regardless of whatever different abilities they may have, can ontribute, can be a source of joy, can beam with pride and love.†--Eunice ennedy Shriver rom: teteme55 <teteme@...> ubject: Re: What We're About o: IPADDUnite ate: Thursday, March 25, 2010, 10:57 PM Dear , I would also agree about a system of checks and balances but.....my son, ussell, is 30 years old and I am just plain tired of it. I am tired and while I ppreciate the whole concept of it, I am just tired. We get burned out and numb and......I use to have a set of Post-Its with the ollowing printed on it, " Crisis Du Jour " and I would use them, quite ften......some times, reading the paper or watching the news, I think to yself, " now what, what hoops will I have to jump through? " It gets a bit much. nd yet, I do it. Anyway, that's my reason for not liking it. Marie We were lucky, our name was picked for HBSSP after our Governor gave out names nd information to Union organizers. I'm sure that it would have bothered me o be constantly bothered about joing a union. As far as privacy goes; doesn't bother me at all. My husband and I were oster Parents for over 15 years. We have lived in the perverbial goldfish bowl ince. I have had to have my home checked, nurses visit and be fingerprinted nd have background checks etc. Literally, the State would come in and check or cleanliness, measurements, food, and of course the safety of the children hat were placed with us. Never bothered me. After Ricky was born it just continued. I feel that having the services is ore important than my privacy. I can see how it may bother some, but I look at t as check and balance. I also find it comforting to know that someone is checking on our loved ones ho are unable to speak for themselves. Someone needs to make sure that abuse s not occuring. I guess that is a carryover of my Parent days. Bedard Ricky, andra and Tiffy's Mom “Every person, regardless of whatever different abilities they may have, can ontribute, can be a source of joy, can beam with pride and love.†--Eunice ennedy Shriver Non-text portions of this message have been removed] ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 After many, many years of providing summer camp to children age 3 - 17 our park district has decided to change the age range to 14. I was told many years ago that my children would be able to attend until age 21 due to the fact that our Special Recreation provided them with a one on one aide so they could be included in our park district. It was a fabulous collaboration between our Park and Special Rec.  I called our Superintendent and he stated that since there was a lack of interest in the teens in our area that the decision was made to cut the age of at 14. I asked him if I could pay for our daughter to attend and volunteer to work. She was looking forward to becoming a Jr. Camp Councelor and working with the younger children. I tried to explain to him the heartbreak he was causing to many teens with disabilities who enjoyed attending because for once they felt a part of their community. They belonged. He was sorry but there was nothing he could do about it. I also explained that due to his decision one parent would now have to stay home during the summer and quit work. This decision had an impact on the entire family. He wasn't budging about this decision.  I did tell him that I would be bringing my daughter in to see him so he could explain his decision to her. Bedard Ricky, andra and Tiffy's Mom  “Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.†--Eunice Kennedy Shriver rom: teteme55 <tetemeameritech (DOT) net> ubject: Re: What We're About o: IPADDUnite@gro ups.com ate: Thursday, March 25, 2010, 10:57 PM Dear , I would also agree about a system of checks and balances but.....my son, ussell, is 30 years old and I am just plain tired of it. I am tired and while I ppreciate the whole concept of it, I am just tired. We get burned out and numb and......I use to have a set of Post-Its with the ollowing printed on it, " Crisis Du Jour " and I would use them, quite ften......some times, reading the paper or watching the news, I think to yself, " now what, what hoops will I have to jump through? " It gets a bit much. nd yet, I do it. Anyway, that's my reason for not liking it. Marie We were lucky, our name was picked for HBSSP after our Governor gave out names nd information to Union organizers. I'm sure that it would have bothered me o be constantly bothered about joing a union. As far as privacy goes; doesn't bother me at all. My husband and I were oster Parents for over 15 years. We have lived in the perverbial goldfish bowl ince. I have had to have my home checked, nurses visit and be fingerprinted nd have background checks etc. Literally, the State would come in and check or cleanliness, measurements, food, and of course the safety of the children hat were placed with us. Never bothered me. After Ricky was born it just continued. I feel that having the services is ore important than my privacy. I can see how it may bother some, but I look at t as check and balance. I also find it comforting to know that someone is checking on our loved ones ho are unable to speak for themselves. Someone needs to make sure that abuse s not occuring. I guess that is a carryover of my Parent days. Bedard Ricky, andra and Tiffy's Mom “Every person, regardless of whatever different abilities they may have, can ontribute, can be a source of joy, can beam with pride and love.†--Eunice ennedy Shriver Non-text portions of this message have been removed] ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 After many, many years of providing summer camp to children age 3 - 17 our park district has decided to change the age range to 14. I was told many years ago that my children would be able to attend until age 21 due to the fact that our Special Recreation provided them with a one on one aide so they could be included in our park district. It was a fabulous collaboration between our Park and Special Rec.  I called our Superintendent and he stated that since there was a lack of interest in the teens in our area that the decision was made to cut the age of at 14. I asked him if I could pay for our daughter to attend and volunteer to work. She was looking forward to becoming a Jr. Camp Councelor and working with the younger children. I tried to explain to him the heartbreak he was causing to many teens with disabilities who enjoyed attending because for once they felt a part of their community. They belonged. He was sorry but there was nothing he could do about it. I also explained that due to his decision one parent would now have to stay home during the summer and quit work. This decision had an impact on the entire family. He wasn't budging about this decision.  I did tell him that I would be bringing my daughter in to see him so he could explain his decision to her. Bedard Ricky, andra and Tiffy's Mom  “Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love.†--Eunice Kennedy Shriver rom: teteme55 <tetemeameritech (DOT) net> ubject: Re: What We're About o: IPADDUnite@gro ups.com ate: Thursday, March 25, 2010, 10:57 PM Dear , I would also agree about a system of checks and balances but.....my son, ussell, is 30 years old and I am just plain tired of it. I am tired and while I ppreciate the whole concept of it, I am just tired. We get burned out and numb and......I use to have a set of Post-Its with the ollowing printed on it, " Crisis Du Jour " and I would use them, quite ften......some times, reading the paper or watching the news, I think to yself, " now what, what hoops will I have to jump through? " It gets a bit much. nd yet, I do it. Anyway, that's my reason for not liking it. Marie We were lucky, our name was picked for HBSSP after our Governor gave out names nd information to Union organizers. I'm sure that it would have bothered me o be constantly bothered about joing a union. As far as privacy goes; doesn't bother me at all. My husband and I were oster Parents for over 15 years. We have lived in the perverbial goldfish bowl ince. I have had to have my home checked, nurses visit and be fingerprinted nd have background checks etc. Literally, the State would come in and check or cleanliness, measurements, food, and of course the safety of the children hat were placed with us. Never bothered me. After Ricky was born it just continued. I feel that having the services is ore important than my privacy. I can see how it may bother some, but I look at t as check and balance. I also find it comforting to know that someone is checking on our loved ones ho are unable to speak for themselves. Someone needs to make sure that abuse s not occuring. I guess that is a carryover of my Parent days. Bedard Ricky, andra and Tiffy's Mom “Every person, regardless of whatever different abilities they may have, can ontribute, can be a source of joy, can beam with pride and love.†--Eunice ennedy Shriver Non-text portions of this message have been removed] ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 I live in Woodridge and has attended the YMCA teen camp (Indian Boundary)the since 7th grade ( he attended Woodridge park district prior to that). They have extended us the offer for him to attend last summer and this summer which is beyond their age limit(he'll be 18 next month). They told me that they love having him and it's been a godsend, he loves it and they love having him. I would be willing to pay for him forever if they'll let him come and the whole Junior Counselor thing is what my goal is. He loves reading stories to the younger kids, okay he loves reading the Tank Engine stories to the younger campers :-) and that is part of his day since he gets there at 7:45 before the main part of the daily activities begin. I would fight this . May I ask where you live? Do they realize what a horrible thing they are doing?? H. Re: Re: What We're About After many, many years of providing summer camp to children age 3 - 17 our park istrict has decided to change the age range to 14. I was told many years ago hat my children would be able to attend until age 21 due to the fact that our pecial Recreation provided them with a one on one aide so they could be ncluded in our park district. It was a fabulous collaboration between our Park nd Special Rec. called our Superintendent and he stated that since there was a lack of nterest in the teens in our area that the decision was made to cut the age of t 14. I asked him if I could pay for our daughter to attend and volunteer to ork. She was looking forward to becoming a Jr. Camp Councelor and working with he younger children. I tried to explain to him the heartbreak he was causing o many teens with disabilities who enjoyed attending because for once they felt part of their community. They belonged. He was sorry but there was nothing e could do about it. I also explained that due to his decision one parent ould now have to stay home during the summer and quit work. This decision had n impact on the entire family. He wasn't budging about this decision. did tell him that I would be bringing my daughter in to see him so he could xplain his decision to her. Bedard icky, andra and Tiffy's Mom Every person, regardless of whatever different abilities they may have, can ontribute, can be a source of joy, can beam with pride and love.†--Eunice ennedy Shriver We were lucky, our name was picked for HBSSP after our Governor gave out names d information to Union organizers. I'm sure that it would have bothered me be constantly bothered about joing a union. As far as privacy goes; doesn't bother me at all. My husband and I were ster Parents for over 15 years. We have lived in the perverbial goldfish bowl nce. I have had to have my home checked, nurses visit and be fingerprinted d have background checks etc. Literally, the State would come in and check r cleanliness, measurements, food, and of course the safety of the children at were placed with us. Never bothered me. After Ricky was born it just continued. I feel that having the services is re important than my privacy. I can see how it may bother some, but I look at as check and balance. I also find it comforting to know that someone is checking on our loved ones o are unable to speak for themselves. Someone needs to make sure that abuse not occuring. I guess that is a carryover of my Parent days. athy Bedard icky, andra and Tiffy's Mom “Every person, regardless of whatever different abilities they may have, can ntribute, can be a source of joy, can beam with pride and love.†--Eunice nnedy Shriver Non-text portions of this message have been removed] ------------ --------- --------- ------ ahoo! Groups Links ndividual Email | Traditional ttp://docs. / info/terms/ Quote Link to comment Share on other sites More sharing options...
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