Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 Alana, That IS very cool! -a Alana <alrt@...> wrote: Here's something that I'm excited to tell this group about! I have been working with the World Institute on Disability (WID) about a difficult conflict that was created by the Social Security Administration. On one hand, we are required to prove that we are unable to work in order to receive the cash and health care benefits we need to survive. On the other hand, the government encourages us to work by presenting us with so called " work incentives " administered by SSA, state vocational rehabilitation, county welfare departments, etc. All of these " work incentive " programs ask us to contradict the premise that we are indeed disabled. As a result of this contradiction, coupled with a lack of understanding among policymakers, these programs are extremely complicated, too difficult to navigate, and are usually extremely punitive. When we choose to utilize them, we do so at risk. When I testified in front of the Social Security Advisory Board in November 2004 they, for the 1st time, publicly acknowledged that their definition of disability must be changed because now, with advanced assistive technology and medicine, even very disabled folks are able to work. Many of us are taking them up on this admission by working to guide them in changing the definition. Last week, I and 2 other policy advocates, from SMAFriends and working on state Medicaid reform and Bryon Mac from WID shot a video about this conflict with filmmaker Wun Yip. Our message is that just because we are able to work a little or even a lot, it doesn't mean our disability-related needs go away. We need a system that separates cash eligibility concerns from health care eligibility. We need to be able to go in and out of the workforce as our disabilities allow without putting our supports in jeopardy. This video will be accompanied by a 30 page document of policy recommendation written by WID when presented to national disability organizations, members of congress and the senate. We will also be distributing the video to consumers, advocates, disability studies academicians, etc. The editing and production is scheduled to be completed around September 20th, and soon thereafter I look forward to showing it to you all on the web. I am hopeful it's a significant step in the direction of liberating us from such an arcane system. Alana --------------------------------- All-new - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 I look forward to seeing the video - first, so I can understand some of the issues better myself, and also be able to better explain these issues to others I know. Thanks for being part of this effort and posting about it as well. Mitch --- " a B. " <kristina45231@...> wrote: > Alana, > > That IS very cool! -a > > Alana <alrt@...> wrote: > Here's something that I'm excited to tell > this group about! I have > been working with the World Institute on Disability > (WID) about a > difficult conflict that was created by the Social > Security > Administration. > > On one hand, we are required to prove that we are > unable to work in > order to receive the cash and health care benefits > we need to > survive. On the other hand, the government > encourages us to work by > presenting us with so called " work incentives " > administered by SSA, > state vocational rehabilitation, county welfare > departments, etc. > > All of these " work incentive " programs ask us to > contradict the > premise that we are indeed disabled. As a result of > this > contradiction, coupled with a lack of understanding > among > policymakers, these programs are extremely > complicated, too difficult > to navigate, and are usually extremely punitive. > When we choose to > utilize them, we do so at risk. > > When I testified in front of the Social Security > Advisory Board in > November 2004 they, for the 1st time, publicly > acknowledged that > their definition of disability must be changed > because now, with > advanced assistive technology and medicine, even > very disabled folks > are able to work. Many of us are taking them up on > this admission by > working to guide them in changing the definition. > > Last week, I and 2 other policy advocates, > from > SMAFriends and working on state Medicaid reform and > Bryon Mac > from WID shot a video about this conflict with > filmmaker Wun Yip. Our > message is that just because we are able to work a > little or even a > lot, it doesn't mean our disability-related needs go > away. We need a > system that separates cash eligibility concerns from > health care > eligibility. We need to be able to go in and out of > the workforce as > our disabilities allow without putting our supports > in jeopardy. > > This video will be accompanied by a 30 page document > of policy > recommendation written by WID when presented to > national disability > organizations, members of congress and the senate. > We will also be > distributing the video to consumers, advocates, > disability studies > academicians, etc. > > The editing and production is scheduled to be > completed around > September 20th, and soon thereafter I look forward > to showing it to > you all on the web. I am hopeful it's a significant > step in the > direction of liberating us from such an arcane > system. > > Alana > > > > > > > --------------------------------- > All-new - Fire up a more powerful email > and get things done faster. > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 That's so great, Alana! Keep us updated! -e Policy Reform Work Here's something that I'm excited to tell this group about! I have been working with the World Institute on Disability (WID) about a difficult conflict that was created by the Social Security Administration. On one hand, we are required to prove that we are unable to work in order to receive the cash and health care benefits we need to survive. On the other hand, the government encourages us to work by presenting us with so called " work incentives " administered by SSA, state vocational rehabilitation, county welfare departments, etc. All of these " work incentive " programs ask us to contradict the premise that we are indeed disabled. As a result of this contradiction, coupled with a lack of understanding among policymakers, these programs are extremely complicated, too difficult to navigate, and are usually extremely punitive. When we choose to utilize them, we do so at risk. When I testified in front of the Social Security Advisory Board in November 2004 they, for the 1st time, publicly acknowledged that their definition of disability must be changed because now, with advanced assistive technology and medicine, even very disabled folks are able to work. Many of us are taking them up on this admission by working to guide them in changing the definition. Last week, I and 2 other policy advocates, from SMAFriends and working on state Medicaid reform and Bryon Mac from WID shot a video about this conflict with filmmaker Wun Yip. Our message is that just because we are able to work a little or even a lot, it doesn't mean our disability-related needs go away. We need a system that separates cash eligibility concerns from health care eligibility. We need to be able to go in and out of the workforce as our disabilities allow without putting our supports in jeopardy. This video will be accompanied by a 30 page document of policy recommendation written by WID when presented to national disability organizations, members of congress and the senate. We will also be distributing the video to consumers, advocates, disability studies academicians, etc. The editing and production is scheduled to be completed around September 20th, and soon thereafter I look forward to showing it to you all on the web. I am hopeful it's a significant step in the direction of liberating us from such an arcane system. Alana ________________________________________________________________________ Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 Great news Alana! It is just so difficult and scary to work while disabled because we just don't know what is going to happen to the support that we do get to keep. I think most people don't even try for that very reason. And then some people look down on the disabled for not working when we seem like we can; but those people have no clue that having the dependable help to get up and dressed on time is a huge factor, a potty break might be needed mid-day so we might give up because there is no help, and the list goes on... I hope this video helps make the changes we need so much! Thanks Alana!! <mongomustgolf@...> wrote: I look forward to seeing the video - first, so I can understand some of the issues better myself, and also be able to better explain these issues to others I know. Thanks for being part of this effort and posting about it as well. Mitch --- " a B. " wrote: > Alana, > > That IS very cool! -a > > Alana wrote: > Here's something that I'm excited to tell > this group about! I have > been working with the World Institute on Disability > (WID) about a > difficult conflict that was created by the Social > Security > Administration. > > On one hand, we are required to prove that we are > unable to work in > order to receive the cash and health care benefits > we need to > survive. On the other hand, the government > encourages us to work by > presenting us with so called " work incentives " > administered by SSA, > state vocational rehabilitation, county welfare > departments, etc. > > All of these " work incentive " programs ask us to > contradict the > premise that we are indeed disabled. As a result of > this > contradiction, coupled with a lack of understanding > among > policymakers, these programs are extremely > complicated, too difficult > to navigate, and are usually extremely punitive. > When we choose to > utilize them, we do so at risk. > > When I testified in front of the Social Security > Advisory Board in > November 2004 they, for the 1st time, publicly > acknowledged that > their definition of disability must be changed > because now, with > advanced assistive technology and medicine, even > very disabled folks > are able to work. Many of us are taking them up on > this admission by > working to guide them in changing the definition. > > Last week, I and 2 other policy advocates, > from > SMAFriends and working on state Medicaid reform and > Bryon Mac > from WID shot a video about this conflict with > filmmaker Wun Yip. Our > message is that just because we are able to work a > little or even a > lot, it doesn't mean our disability-related needs go > away. We need a > system that separates cash eligibility concerns from > health care > eligibility. We need to be able to go in and out of > the workforce as > our disabilities allow without putting our supports > in jeopardy. > > This video will be accompanied by a 30 page document > of policy > recommendation written by WID when presented to > national disability > organizations, members of congress and the senate. > We will also be > distributing the video to consumers, advocates, > disability studies > academicians, etc. > > The editing and production is scheduled to be > completed around > September 20th, and soon thereafter I look forward > to showing it to > you all on the web. I am hopeful it's a significant > step in the > direction of liberating us from such an arcane > system. > > Alana > > > > > > > --------------------------------- > All-new - Fire up a more powerful email > and get things done faster. > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 " Great news Alana! It is just so difficult and scary to work while disabled because we just don't know what is going to happen to the support that we do get to keep. I think most people don't even try for that very reason. " I know this is one of the main reasons I haven't tried to get back into the work force. I'm not sure I could get a job flexible enough while replacing the income I get from SSDI. Added to that, I do not think many insurances, outside Medicare, would even accept me. Not to mention, I get sick with stuff so randomly, especially when I'm outside the home a lot and have more exposure to germs, that I'd burn through any sick days I'd get rapidly. Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 Jenn, If you're just on SSDI and Medicare you can earn up to $860/month without affecting your benefits. Though, you may be on other programs that could be affected. Alana > > > I know this is one of the main reasons I haven't tried to get back > into the work force. I'm not sure I could get a job flexible > enough while replacing the income I get from SSDI. Added to > that, I do not think many insurances, outside Medicare, > would even accept me. Not to mention, I get sick with stuff > so randomly, especially when I'm outside the home a lot > and have more exposure to germs, that I'd burn through > any sick days I'd get rapidly. > > Jenn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 If I got a job, wouldn't they say I'm not disabled enough to be " retired " anymore? Jenn > > Jenn, > > If you're just on SSDI and Medicare you can earn up to $860/month > without affecting your benefits. Though, you may be on other > programs that could be affected. > > Alana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 are you on retirement benefits or SSDI? > > > > Jenn, > > > > If you're just on SSDI and Medicare you can earn up to $860/month > > without affecting your benefits. Though, you may be on other > > programs that could be affected. > > > > Alana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 You're allowed to earn a certain amount of money per month for a period of time without affecting your benefits. There are 9 months called trial work months. These do not have to occur consecutively. This happens whenever you earn more than $620/month. After you have used all 9 months of the trial work months, there are 3 months in which you must earn over $860/month, called extended eligibility. You will continue to receive SSDI during these periods. However, after the extended eligibilty is done, SSDI will stop. If, within 36 months, you cease to earn $860/month, your SSDI benefits will continue. You are no longer eligible for SSDI if you earn $620/month for 9 months AND more than $860/month for 36 consecutive months thereafter. <3 Kendra > > > > Jenn, > > > > If you're just on SSDI and Medicare you can earn up to $860/month > > without affecting your benefits. Though, you may be on other > > programs that could be affected. > > > > Alana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 In a message dated 8/27/2006 2:23:51 A.M. Pacific Standard Time, kendranicole@... writes: You're allowed to earn a certain amount of money per month for a period of time without affecting your benefits. There are 9 months called trial work months. These do not have to occur consecutively. This happens whenever you earn more than $620/month. After you have used all 9 months of the trial work months, there are 3 months in which you must earn over $860/month, called extended eligibility. You will continue to receive SSDI during these periods. However, after the extended eligibilty is done, SSDI will stop. If, within 36 months, you cease to earn $860/month, your SSDI benefits will continue. You are no longer eligible for SSDI if you earn $620/month for 9 months AND more than $860/month for 36 consecutive months thereafter. Does this also work for SSI or are there different rules for that? Deena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 Deena, The SSI rules are indeed different. If you have no other source of income, the 1st $85/month of gross earned income does not count. After that your SSI will be reduced by 50 cents for every dollar you earn. All the rules for working while on SSI and/or SSDI can be found in the Red Book. See: http://www.socialsecurity.gov/disabilityresearch/redbook.htm Talk with a benefits planner before you proceed. This is a good resource for Californians: http://www.disabilitybenefits101.org/ Alana > Does this also work for SSI or are there different rules for that? > > Deena > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 > > are you on retirement benefits or SSDI? They said I was " retiring on disability, " whatever that means. Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 Thanks for clearing that up. I'm very worried about getting myself in a position where my SSDI would stop. My body decides to just break down at random intervals and I can really see one of these episodes happening right at the 12 month mark. Plus when I was working, I seemed to get every illness that ran through the office, and burned up my sick days very quickly. My quirky immune system was one of the main reasons the doctors encouraged me to retire. I'd almost need to completely retrain for some sort of tech job I could do at home. Sigh. Jenn > > You're allowed to earn a certain amount of money per month for a > period of time without affecting your benefits. There are 9 months > called trial work months. These do not have to occur consecutively. > This happens whenever you earn more than $620/month. After you have > used all 9 months of the trial work months, there are 3 months in > which you must earn over $860/month, called extended eligibility. You > will continue to receive SSDI during these periods. However, after the > extended eligibilty is done, SSDI will stop. If, within 36 months, you > cease to earn $860/month, your SSDI benefits will continue. You are no > longer eligible for SSDI if you earn $620/month for 9 months AND more > than $860/month for 36 consecutive months thereafter. > > <3 Kendra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 Well, it's important to differentiate what type of benefits you're on because the rules about working are different for people on SSDI and those on Social Security Retirement. The rules Kendra posted are for SSDI. The best way to find out what your benefits status is, is to call SSA and ask for a " Benefits Planning Query " . > > > > are you on retirement benefits or SSDI? > > They said I was " retiring on disability, " whatever that means. > > Jenn > Quote Link to comment Share on other sites More sharing options...
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