Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Our family was in the same situation. However, we hired an attorney and got Medicaid for our daughter, Jillyan. Now our SSI benefits are only $30/month due to our income, but I was aiming at the Medicaid to help with the medical bills, equipment, etc. With Medicaid there is a loop hole for families that make too much money (I think it is called an income waiver). We basically had to get all of Jillyan's med records sent to our attorney. He then went before a judge to prove that our daughter would be in the care of her parents for her entire life due to her disabilities and medical issues. My impression is the only way to obtain the income waiver status is by legal means -- you just can't apply for it. Unfortunately, SSI will not kick in for Jillyan due to her " legal blindness " until the age of 18. It cost me $1500 to get the Medicaid, but I pay $0 for prescription, $0 for her heart surgery this past August and $0 for her $1500 AFO's we got last month -- well worth every penny. We do have primary insurance and Medicaid is our secondary so it picks up all copays, deductibles, etc. Another benefit is that when my 20 visits for OT, Speech and PT are used up then Medicaid kicks in and pays for the rest of the year. If found my attorney via a gal I met who had a special needs child. Hope this information helps. Huggins Mom to Jillyan (4 - CHARGER) and Hailey (9) > > > Bonnie, > > As I understand it from my days as a transition planning specialist, > most students who are deafblind get SSI. The few that got SSDI got it > because they had a parent who was either on disability and unable to > continue working or the parent was deceased. SSDI is based on a worker's > contribution to FICA (I think). The reference below has some good > detail. > > Betsy > > > > Social Security disability benefits consist of monthly payments and/or > Medicare benefits which provide compensation to those who are disabled > from performing substantial gainful work of any kind. Social Security > benefits can be obtained through two programs; (1) Social Security > Disability Insurance (SSDI) or (2) Supplemental Security Income (SSI). > Both SSDI and SSI have the same medical requirements, to be discussed > below. However, SSDI requires a certain amount of credit earned for > prior work, whereas SSI is based solely on financial need, regardless of > prior work. http://www.disabilityadvocates.net/ssi-basics.html > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Our family was in the same situation. However, we hired an attorney and got Medicaid for our daughter, Jillyan. Now our SSI benefits are only $30/month due to our income, but I was aiming at the Medicaid to help with the medical bills, equipment, etc. With Medicaid there is a loop hole for families that make too much money (I think it is called an income waiver). We basically had to get all of Jillyan's med records sent to our attorney. He then went before a judge to prove that our daughter would be in the care of her parents for her entire life due to her disabilities and medical issues. My impression is the only way to obtain the income waiver status is by legal means -- you just can't apply for it. Unfortunately, SSI will not kick in for Jillyan due to her " legal blindness " until the age of 18. It cost me $1500 to get the Medicaid, but I pay $0 for prescription, $0 for her heart surgery this past August and $0 for her $1500 AFO's we got last month -- well worth every penny. We do have primary insurance and Medicaid is our secondary so it picks up all copays, deductibles, etc. Another benefit is that when my 20 visits for OT, Speech and PT are used up then Medicaid kicks in and pays for the rest of the year. If found my attorney via a gal I met who had a special needs child. Hope this information helps. Huggins Mom to Jillyan (4 - CHARGER) and Hailey (9) > > > Bonnie, > > As I understand it from my days as a transition planning specialist, > most students who are deafblind get SSI. The few that got SSDI got it > because they had a parent who was either on disability and unable to > continue working or the parent was deceased. SSDI is based on a worker's > contribution to FICA (I think). The reference below has some good > detail. > > Betsy > > > > Social Security disability benefits consist of monthly payments and/or > Medicare benefits which provide compensation to those who are disabled > from performing substantial gainful work of any kind. Social Security > benefits can be obtained through two programs; (1) Social Security > Disability Insurance (SSDI) or (2) Supplemental Security Income (SSI). > Both SSDI and SSI have the same medical requirements, to be discussed > below. However, SSDI requires a certain amount of credit earned for > prior work, whereas SSI is based solely on financial need, regardless of > prior work. http://www.disabilityadvocates.net/ssi-basics.html > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 - Do you know if the loophole you used was the Beckett Medicaid waiver for your state? I'm just trying to understand so I can figure out how this could apply to others. Wouldn't it be great if we could all manage to get Medicaid? Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 I am not familiar with that waiver. I happened to run into this Mom at one of our many doctor visits and she informed me that there was a way around the income requirement. Basically I really went through Social Security via my attorney to obtain the income waiver and then that opened up Medicaid to our family. He instructed us that going through SSI was the way to get to the Medicaid part that we were wanting -- that is why the small SSI payment as I had to get that first. We didn't have to go to court at all. He went before a judge, presented her medical history and it was granted -- and belive it or not it was retro back for one year -- I didn't ask why and just accepted the SSI benefits and then had my providers all file with Medicaid for all the money we had been out for the prior year. The unfortunate thing he has stopped doing this now as he was afraid that over exposure by him would result in the loop hole being closed for other families -- Apparently the families he had helped were referring others and he was getting " to well known " for getting this benefit for others. I'll see if I can get some additional information from him on exactly what process he followed so I can pass this information on. Huggins Mom to Jillyan (4 - CHARGER) and Hailey (9) > > - > Do you know if the loophole you used was the Beckett Medicaid waiver > for your state? I'm just trying to understand so I can figure out how this > could apply to others. Wouldn't it be great if we could all manage to get > Medicaid? > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 I am not familiar with that waiver. I happened to run into this Mom at one of our many doctor visits and she informed me that there was a way around the income requirement. Basically I really went through Social Security via my attorney to obtain the income waiver and then that opened up Medicaid to our family. He instructed us that going through SSI was the way to get to the Medicaid part that we were wanting -- that is why the small SSI payment as I had to get that first. We didn't have to go to court at all. He went before a judge, presented her medical history and it was granted -- and belive it or not it was retro back for one year -- I didn't ask why and just accepted the SSI benefits and then had my providers all file with Medicaid for all the money we had been out for the prior year. The unfortunate thing he has stopped doing this now as he was afraid that over exposure by him would result in the loop hole being closed for other families -- Apparently the families he had helped were referring others and he was getting " to well known " for getting this benefit for others. I'll see if I can get some additional information from him on exactly what process he followed so I can pass this information on. Huggins Mom to Jillyan (4 - CHARGER) and Hailey (9) > > - > Do you know if the loophole you used was the Beckett Medicaid waiver > for your state? I'm just trying to understand so I can figure out how this > could apply to others. Wouldn't it be great if we could all manage to get > Medicaid? > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 - More info would be very helpful. Sounds interesting... Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 Thank you, that would be helpful. We already receive Medi-Cal because Josh is Institutionally deemed, but there has got to be some loop hole for the disability aspect, especially since I can't go back to work because of Josh. What kind of attorney did you retain? Bernie shuggins316 wrote: I am not familiar with that waiver. I happened to run into this Mom at one of our many doctor visits and she informed me that there was a way around the income requirement. Basically I really went through Social Security via my attorney to obtain the income waiver and then that opened up Medicaid to our family. He instructed us that going through SSI was the way to get to the Medicaid part that we were wanting -- that is why the small SSI payment as I had to get that first. We didn't have to go to court at all. He went before a judge, presented her medical history and it was granted -- and belive it or not it was retro back for one year -- I didn't ask why and just accepted the SSI benefits and then had my providers all file with Medicaid for all the money we had been out for the prior year. The unfortunate thing he has stopped doing this now as he was afraid that over exposure by him would result in the loop hole being closed for other families -- Apparently the families he had helped were referring others and he was getting " to well known " for getting this benefit for others. I'll see if I can get some additional information from him on exactly what process he followed so I can pass this information on. Huggins Mom to Jillyan (4 - CHARGER) and Hailey (9) > > - > Do you know if the loophole you used was the Beckett Medicaid waiver > for your state? I'm just trying to understand so I can figure out how this > could apply to others. Wouldn't it be great if we could all manage to get > Medicaid? > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 Thank you, that would be helpful. We already receive Medi-Cal because Josh is Institutionally deemed, but there has got to be some loop hole for the disability aspect, especially since I can't go back to work because of Josh. What kind of attorney did you retain? Bernie shuggins316 wrote: I am not familiar with that waiver. I happened to run into this Mom at one of our many doctor visits and she informed me that there was a way around the income requirement. Basically I really went through Social Security via my attorney to obtain the income waiver and then that opened up Medicaid to our family. He instructed us that going through SSI was the way to get to the Medicaid part that we were wanting -- that is why the small SSI payment as I had to get that first. We didn't have to go to court at all. He went before a judge, presented her medical history and it was granted -- and belive it or not it was retro back for one year -- I didn't ask why and just accepted the SSI benefits and then had my providers all file with Medicaid for all the money we had been out for the prior year. The unfortunate thing he has stopped doing this now as he was afraid that over exposure by him would result in the loop hole being closed for other families -- Apparently the families he had helped were referring others and he was getting " to well known " for getting this benefit for others. I'll see if I can get some additional information from him on exactly what process he followed so I can pass this information on. Huggins Mom to Jillyan (4 - CHARGER) and Hailey (9) > > - > Do you know if the loophole you used was the Beckett Medicaid waiver > for your state? I'm just trying to understand so I can figure out how this > could apply to others. Wouldn't it be great if we could all manage to get > Medicaid? > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > CHARGE SYNDROME LISTSERV PHOTO PAGE: http://www.imagestation.com/album/?id=2117043995 Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 , Oh how wrong can we be. When we set this up before she graduated we had little to no help. We went to the social security office and were forced to put Patty through a multitude of tests to prove she was disabled. That's how she finally was declared legally blind. Then they put her on SSI. After this meeting at Perkins I have been made aware of more things including SSDI. I go to the CHARGE board meeting this weekend but when I get back-calls are being made. The lack of guidance and information is just silly. Thank goodness for Perkins or I would be blowing in the wind half the time. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 , Oh how wrong can we be. When we set this up before she graduated we had little to no help. We went to the social security office and were forced to put Patty through a multitude of tests to prove she was disabled. That's how she finally was declared legally blind. Then they put her on SSI. After this meeting at Perkins I have been made aware of more things including SSDI. I go to the CHARGE board meeting this weekend but when I get back-calls are being made. The lack of guidance and information is just silly. Thank goodness for Perkins or I would be blowing in the wind half the time. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 The process we had to go through with our attorney was to first get all her medical records to him. Then we had to apply for SSI again and get a deinal. We filled out the forms and of course we made too much money and we got the denial. Within that 60 day period you have the chance to appeal. Our attorney then went before an Administrative Law Judge and presented our daughter's medical history. In our case, Jillyan will be dependent upon us for the rest of her life due to her mental and physical impairments. Jillyan's file was quite extensive so it was obvious she would never be on her own without her parents or institutionalized. Once the Admn Law Judge granted us SSI then we automatically qualified for Medicaid benefits in the State of North Carolina. Basically, we just followed the appeals process set out in our state. I felt having an attorney was well worth it to represent us because he new the system and he also new the judge he went in front of and every little connection helps. We could have requested the hearing in front of the judge and done it ourselves, but our attorney knew what he was doing and we got it done in one shot. To my knowledge there was no way for me to get any supplemental income if I stayed home. My husband on his own makes too much money according to the system -- as they count 401(k), pension, IRA's, etc. When that was added up in combination with his salary there was no way to get any money for me staying home so I did in fact have to return to work. Our SSI benefits are only $30/month and I stash that in Jillyan's savings account. I guess in our case I just needed the Medicaid to help out with all the excess the insurance was not covering due to my husband's company switching to a new plan under United, which didn't compare to the great coverage we had under Aetna. Hope this information helps. Huggins Mom to Jillyan (4 - CHARGER) and Hailey (9) North Carolina > > > > - > > Do you know if the loophole you used was the Beckett > Medicaid waiver > > for your state? I'm just trying to understand so I can figure out > how this > > could apply to others. Wouldn't it be great if we could all > manage to get > > Medicaid? > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.