Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 I care for my sister 24/7 and she has Down Syndrome and SDS/MSA. She lives with me and I can no longer work and must pay my own insurance etc. She receives medicaid and ssi from the State of Maine and SS and believe me it is not very much. Our parents are both deceased and I am her legal guardian. Hope I haven't lost you yet. Here's my question...... because my sister is petrified of walking on snow and ice (always has been) and because we are able to stay with a 91 aunt in Florida, we have come here for a vacation for 6 weeks. I just found out that medicaid is dropping her because we have left the state. How can this be?????? Even though my aunt is 91, she is the ONLY source of respite that I get. My sister can swim in a pool every day here. At home she is absolutely house bound in the winter. Believe me when I say that I am doing it for my sister, I would much rather be at my own home, snow and all. Of course my big concern is her medication and the cost. I could not possibly afford to pay it even for a month. I am sorry that this is so long and I am not looking for pity, I am just out of solutions and was hoping someone might have some answers. Again, thanks for being here, you all are my lifeline. & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 , I am STILL with her 24/7. I did not mean to imply that her 91 year old aunt took care of her. What I meant was.....it is another pair of ears, another pair of eyes and it does provide me with a little break from the never-ending questions. Yes, she is medically fragile, as any SDS/MSA patient is, plus she has other unrelated conditions associated with Down's. She does meet the criteria for nursing home eligibility and I hope that it doesn't ever come to that. In an effort to keep her home, I am paid a very small amount for agreeing to care for her at home. I am eternally grateful for it too. I am also a CNA and have worked for many years with people with disabilites. Does being medical fragile mean that one can never leave home. As everyone on this list will attest to, it is so important to keep moving both for mind as well as the body. We have to travel from Maine to Massachusetts to find a doctor that is knowledgeable about MSA and I have been told that they " don't want to hear about that. " Pardon me if I misled you by having you think my aunt was provideing care for her, she has the place and we have been invited for what was supposed to be a vacation. I think now that we shall have to return to Maine. It will be a hard one to explain to poor Chrissie. & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 , I am STILL with her 24/7. I did not mean to imply that her 91 year old aunt took care of her. What I meant was.....it is another pair of ears, another pair of eyes and it does provide me with a little break from the never-ending questions. Yes, she is medically fragile, as any SDS/MSA patient is, plus she has other unrelated conditions associated with Down's. She does meet the criteria for nursing home eligibility and I hope that it doesn't ever come to that. In an effort to keep her home, I am paid a very small amount for agreeing to care for her at home. I am eternally grateful for it too. I am also a CNA and have worked for many years with people with disabilites. Does being medical fragile mean that one can never leave home. As everyone on this list will attest to, it is so important to keep moving both for mind as well as the body. We have to travel from Maine to Massachusetts to find a doctor that is knowledgeable about MSA and I have been told that they " don't want to hear about that. " Pardon me if I misled you by having you think my aunt was provideing care for her, she has the place and we have been invited for what was supposed to be a vacation. I think now that we shall have to return to Maine. It will be a hard one to explain to poor Chrissie. & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 , I am STILL with her 24/7. I did not mean to imply that her 91 year old aunt took care of her. What I meant was.....it is another pair of ears, another pair of eyes and it does provide me with a little break from the never-ending questions. Yes, she is medically fragile, as any SDS/MSA patient is, plus she has other unrelated conditions associated with Down's. She does meet the criteria for nursing home eligibility and I hope that it doesn't ever come to that. In an effort to keep her home, I am paid a very small amount for agreeing to care for her at home. I am eternally grateful for it too. I am also a CNA and have worked for many years with people with disabilites. Does being medical fragile mean that one can never leave home. As everyone on this list will attest to, it is so important to keep moving both for mind as well as the body. We have to travel from Maine to Massachusetts to find a doctor that is knowledgeable about MSA and I have been told that they " don't want to hear about that. " Pardon me if I misled you by having you think my aunt was provideing care for her, she has the place and we have been invited for what was supposed to be a vacation. I think now that we shall have to return to Maine. It will be a hard one to explain to poor Chrissie. & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 , It is neither a vacation or respite for ME. I am still with her only in a different location and with a 91 year old too. Not my idea of a vacation, although it is for Chrissie. I just don't understand the rationale sometimes and I know you are just saying what you know I will hear from them. They did tell me that I could put her in a nursing home for a month if I wanted to take myself on a vacation. Now doesn't that make sense. & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 , It is neither a vacation or respite for ME. I am still with her only in a different location and with a 91 year old too. Not my idea of a vacation, although it is for Chrissie. I just don't understand the rationale sometimes and I know you are just saying what you know I will hear from them. They did tell me that I could put her in a nursing home for a month if I wanted to take myself on a vacation. Now doesn't that make sense. & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 Hi I don't have any real answers for you. This doesn't sound right to me though... are people in the US not allowed to go away on vacation? Totally ludicrous. Maybe call or write your representatives in Maine to find out if anything can be done. Love, Pam Macklockj@... wrote: > I care for my sister 24/7 and she has Down Syndrome and SDS/MSA. She lives > with me and I can no longer work and must pay my own insurance etc. > She receives medicaid and ssi from the State of Maine and SS and believe me > it is not very much. > Our parents are both deceased and I am her legal guardian. Hope I haven't > lost you yet. > Here's my question...... because my sister is petrified of walking on snow > and ice (always has been) and because we are able to stay with a 91 aunt in > Florida, we have come here for a vacation for 6 weeks. I just found out that > medicaid is dropping her because we have left the state. How can this be?????? > Even though my aunt is 91, she is the ONLY source of respite that I get. > My sister can swim in a pool every day here. At home she is absolutely house > bound in the winter. Believe me when I say that I am doing it for my sister, > I would much rather be at my own home, snow and all. > Of course my big concern is her medication and the cost. I could not possibly > afford to pay it even for a month. > I am sorry that this is so long and I am not looking for pity, I am just out > of solutions and was hoping someone might have some answers. > Again, thanks for being here, you all are my lifeline. > & Chrissie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 Medicaid is meant for chronically longtern medically fragile patients. It is dangerous in the states and physicians eyes for someone 'that ill' to go away for 6 weeks. Who took care of her? the state will ask. A 91 year old aunt can not take care of a patient in that condition. Sorry. that is how the state and medical people most likely view that action. nancy Pam Bower wrote: > > Hi > > I don't have any real answers for you. This doesn't sound right to me though... > are people in the US not allowed to go away on vacation? Totally ludicrous. > Maybe call or write your representatives in Maine to find out if anything can be > done. > > Love, > Pam > > Macklockj@... wrote: > > > I care for my sister 24/7 and she has Down Syndrome and SDS/MSA. She lives > > with me and I can no longer work and must pay my own insurance etc. > > She receives medicaid and ssi from the State of Maine and SS and believe me > > it is not very much. > > Our parents are both deceased and I am her legal guardian. Hope I haven't > > lost you yet. > > Here's my question...... because my sister is petrified of walking on snow > > and ice (always has been) and because we are able to stay with a 91 aunt in > > Florida, we have come here for a vacation for 6 weeks. I just found out that > > medicaid is dropping her because we have left the state. How can this be?????? > > Even though my aunt is 91, she is the ONLY source of respite that I get. > > My sister can swim in a pool every day here. At home she is absolutely house > > bound in the winter. Believe me when I say that I am doing it for my sister, > > I would much rather be at my own home, snow and all. > > Of course my big concern is her medication and the cost. I could not possibly > > afford to pay it even for a month. > > I am sorry that this is so long and I am not looking for pity, I am just out > > of solutions and was hoping someone might have some answers. > > Again, thanks for being here, you all are my lifeline. > > & Chrissie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 Medicaid is meant for chronically longtern medically fragile patients. It is dangerous in the states and physicians eyes for someone 'that ill' to go away for 6 weeks. Who took care of her? the state will ask. A 91 year old aunt can not take care of a patient in that condition. Sorry. that is how the state and medical people most likely view that action. nancy Pam Bower wrote: > > Hi > > I don't have any real answers for you. This doesn't sound right to me though... > are people in the US not allowed to go away on vacation? Totally ludicrous. > Maybe call or write your representatives in Maine to find out if anything can be > done. > > Love, > Pam > > Macklockj@... wrote: > > > I care for my sister 24/7 and she has Down Syndrome and SDS/MSA. She lives > > with me and I can no longer work and must pay my own insurance etc. > > She receives medicaid and ssi from the State of Maine and SS and believe me > > it is not very much. > > Our parents are both deceased and I am her legal guardian. Hope I haven't > > lost you yet. > > Here's my question...... because my sister is petrified of walking on snow > > and ice (always has been) and because we are able to stay with a 91 aunt in > > Florida, we have come here for a vacation for 6 weeks. I just found out that > > medicaid is dropping her because we have left the state. How can this be?????? > > Even though my aunt is 91, she is the ONLY source of respite that I get. > > My sister can swim in a pool every day here. At home she is absolutely house > > bound in the winter. Believe me when I say that I am doing it for my sister, > > I would much rather be at my own home, snow and all. > > Of course my big concern is her medication and the cost. I could not possibly > > afford to pay it even for a month. > > I am sorry that this is so long and I am not looking for pity, I am just out > > of solutions and was hoping someone might have some answers. > > Again, thanks for being here, you all are my lifeline. > > & Chrissie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 , I think that you've missed the point here--- didn't take Chrissie to Florida to leave her with her aunt----she went there because she had a place to stay with Chrissie. This is not a move, it's just a " vacation " . In a conversation with a manager at Social Security on their toll free number I was just told that " People are not cut off just because they travel. " Don Summers nancy wrote: > Medicaid is meant for chronically longtern medically fragile patients. > It is dangerous in the states and physicians eyes for someone 'that ill' > to go away for 6 weeks. Who took care of her? the state will ask. A 91 > year old aunt can not take care of a patient in that condition. Sorry. > that is how the state and medical people most likely view that action. > > nancy > > Pam Bower wrote: > > > > Hi > > > > I don't have any real answers for you. This doesn't sound right to me though... > > are people in the US not allowed to go away on vacation? Totally ludicrous. > > Maybe call or write your representatives in Maine to find out if anything can be > > done. > > > > Love, > > Pam > > > > Macklockj@... wrote: > > > > > I care for my sister 24/7 and she has Down Syndrome and SDS/MSA. She lives > > > with me and I can no longer work and must pay my own insurance etc. > > > She receives medicaid and ssi from the State of Maine and SS and believe me > > > it is not very much. > > > Our parents are both deceased and I am her legal guardian. Hope I haven't > > > lost you yet. > > > Here's my question...... because my sister is petrified of walking on snow > > > and ice (always has been) and because we are able to stay with a 91 aunt in > > > Florida, we have come here for a vacation for 6 weeks. I just found out that > > > medicaid is dropping her because we have left the state. How can this be?????? > > > Even though my aunt is 91, she is the ONLY source of respite that I get. > > > My sister can swim in a pool every day here. At home she is absolutely house > > > bound in the winter. Believe me when I say that I am doing it for my sister, > > > I would much rather be at my own home, snow and all. > > > Of course my big concern is her medication and the cost. I could not possibly > > > afford to pay it even for a month. > > > I am sorry that this is so long and I am not looking for pity, I am just out > > > of solutions and was hoping someone might have some answers. > > > Again, thanks for being here, you all are my lifeline. > > > & Chrissie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 , I think that you've missed the point here--- didn't take Chrissie to Florida to leave her with her aunt----she went there because she had a place to stay with Chrissie. This is not a move, it's just a " vacation " . In a conversation with a manager at Social Security on their toll free number I was just told that " People are not cut off just because they travel. " Don Summers nancy wrote: > Medicaid is meant for chronically longtern medically fragile patients. > It is dangerous in the states and physicians eyes for someone 'that ill' > to go away for 6 weeks. Who took care of her? the state will ask. A 91 > year old aunt can not take care of a patient in that condition. Sorry. > that is how the state and medical people most likely view that action. > > nancy > > Pam Bower wrote: > > > > Hi > > > > I don't have any real answers for you. This doesn't sound right to me though... > > are people in the US not allowed to go away on vacation? Totally ludicrous. > > Maybe call or write your representatives in Maine to find out if anything can be > > done. > > > > Love, > > Pam > > > > Macklockj@... wrote: > > > > > I care for my sister 24/7 and she has Down Syndrome and SDS/MSA. She lives > > > with me and I can no longer work and must pay my own insurance etc. > > > She receives medicaid and ssi from the State of Maine and SS and believe me > > > it is not very much. > > > Our parents are both deceased and I am her legal guardian. Hope I haven't > > > lost you yet. > > > Here's my question...... because my sister is petrified of walking on snow > > > and ice (always has been) and because we are able to stay with a 91 aunt in > > > Florida, we have come here for a vacation for 6 weeks. I just found out that > > > medicaid is dropping her because we have left the state. How can this be?????? > > > Even though my aunt is 91, she is the ONLY source of respite that I get. > > > My sister can swim in a pool every day here. At home she is absolutely house > > > bound in the winter. Believe me when I say that I am doing it for my sister, > > > I would much rather be at my own home, snow and all. > > > Of course my big concern is her medication and the cost. I could not possibly > > > afford to pay it even for a month. > > > I am sorry that this is so long and I am not looking for pity, I am just out > > > of solutions and was hoping someone might have some answers. > > > Again, thanks for being here, you all are my lifeline. > > > & Chrissie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 , I think that you've missed the point here--- didn't take Chrissie to Florida to leave her with her aunt----she went there because she had a place to stay with Chrissie. This is not a move, it's just a " vacation " . In a conversation with a manager at Social Security on their toll free number I was just told that " People are not cut off just because they travel. " Don Summers nancy wrote: > Medicaid is meant for chronically longtern medically fragile patients. > It is dangerous in the states and physicians eyes for someone 'that ill' > to go away for 6 weeks. Who took care of her? the state will ask. A 91 > year old aunt can not take care of a patient in that condition. Sorry. > that is how the state and medical people most likely view that action. > > nancy > > Pam Bower wrote: > > > > Hi > > > > I don't have any real answers for you. This doesn't sound right to me though... > > are people in the US not allowed to go away on vacation? Totally ludicrous. > > Maybe call or write your representatives in Maine to find out if anything can be > > done. > > > > Love, > > Pam > > > > Macklockj@... wrote: > > > > > I care for my sister 24/7 and she has Down Syndrome and SDS/MSA. She lives > > > with me and I can no longer work and must pay my own insurance etc. > > > She receives medicaid and ssi from the State of Maine and SS and believe me > > > it is not very much. > > > Our parents are both deceased and I am her legal guardian. Hope I haven't > > > lost you yet. > > > Here's my question...... because my sister is petrified of walking on snow > > > and ice (always has been) and because we are able to stay with a 91 aunt in > > > Florida, we have come here for a vacation for 6 weeks. I just found out that > > > medicaid is dropping her because we have left the state. How can this be?????? > > > Even though my aunt is 91, she is the ONLY source of respite that I get. > > > My sister can swim in a pool every day here. At home she is absolutely house > > > bound in the winter. Believe me when I say that I am doing it for my sister, > > > I would much rather be at my own home, snow and all. > > > Of course my big concern is her medication and the cost. I could not possibly > > > afford to pay it even for a month. > > > I am sorry that this is so long and I am not looking for pity, I am just out > > > of solutions and was hoping someone might have some answers. > > > Again, thanks for being here, you all are my lifeline. > > > & Chrissie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 I know of another patient that was told the same thing as Jean. I guess in some states they don't pay for respite anymore? I am wondering if the State viewed this as respite or a 'vacation'. I also heard of another patient on medicaid that the HHA threaten that if the patient didn't sign the hours for while the patient was gone, that she (HHA) would report that patient to the govt. The patient did not sign the HHA's hours knowing that if the HHA did report fraud that the HHA herself would be breaking the law by accepting pay for services not performed. The HHA was fired. The statement about my prior posting about medicaid isn't believed by me, but the many State reviewers and those are questions they ask. Heck if it was up to me, people should live their life at the beginning of birth , not have to wait til they are sick. Don Summers wrote: > > In a conversation with a manager at Social Security on their toll free number I was > just told that " People are not cut off just because they travel. " > Don Summers > > > > Macklockj@... wrote: > > > > > > > Here's my question...... because my sister is petrified of walking on snow > > > > and ice (always has been) and because we are able to stay with a 91 aunt in > > > > Florida, we have come here for a vacation for 6 weeks. I just found out that > > > > medicaid is dropping her because we have left the state. How can this be?????? > > > > Even though my aunt is 91, she is the ONLY source of respite that I get. > > > > My sister can swim in a pool every day here. At home she is absolutely house > > > > bound in the winter. Believe me when I say that I am doing it for my sister, > > > > I would much rather be at my own home, snow and all. > > > > Of course my big concern is her medication and the cost. I could not possibly > > > > afford to pay it even for a month. > > > > & Chrissie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 I know of another patient that was told the same thing as Jean. I guess in some states they don't pay for respite anymore? I am wondering if the State viewed this as respite or a 'vacation'. I also heard of another patient on medicaid that the HHA threaten that if the patient didn't sign the hours for while the patient was gone, that she (HHA) would report that patient to the govt. The patient did not sign the HHA's hours knowing that if the HHA did report fraud that the HHA herself would be breaking the law by accepting pay for services not performed. The HHA was fired. The statement about my prior posting about medicaid isn't believed by me, but the many State reviewers and those are questions they ask. Heck if it was up to me, people should live their life at the beginning of birth , not have to wait til they are sick. Don Summers wrote: > > In a conversation with a manager at Social Security on their toll free number I was > just told that " People are not cut off just because they travel. " > Don Summers > > > > Macklockj@... wrote: > > > > > > > Here's my question...... because my sister is petrified of walking on snow > > > > and ice (always has been) and because we are able to stay with a 91 aunt in > > > > Florida, we have come here for a vacation for 6 weeks. I just found out that > > > > medicaid is dropping her because we have left the state. How can this be?????? > > > > Even though my aunt is 91, she is the ONLY source of respite that I get. > > > > My sister can swim in a pool every day here. At home she is absolutely house > > > > bound in the winter. Believe me when I say that I am doing it for my sister, > > > > I would much rather be at my own home, snow and all. > > > > Of course my big concern is her medication and the cost. I could not possibly > > > > afford to pay it even for a month. > > > > & Chrissie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 I know of another patient that was told the same thing as Jean. I guess in some states they don't pay for respite anymore? I am wondering if the State viewed this as respite or a 'vacation'. I also heard of another patient on medicaid that the HHA threaten that if the patient didn't sign the hours for while the patient was gone, that she (HHA) would report that patient to the govt. The patient did not sign the HHA's hours knowing that if the HHA did report fraud that the HHA herself would be breaking the law by accepting pay for services not performed. The HHA was fired. The statement about my prior posting about medicaid isn't believed by me, but the many State reviewers and those are questions they ask. Heck if it was up to me, people should live their life at the beginning of birth , not have to wait til they are sick. Don Summers wrote: > > In a conversation with a manager at Social Security on their toll free number I was > just told that " People are not cut off just because they travel. " > Don Summers > > > > Macklockj@... wrote: > > > > > > > Here's my question...... because my sister is petrified of walking on snow > > > > and ice (always has been) and because we are able to stay with a 91 aunt in > > > > Florida, we have come here for a vacation for 6 weeks. I just found out that > > > > medicaid is dropping her because we have left the state. How can this be?????? > > > > Even though my aunt is 91, she is the ONLY source of respite that I get. > > > > My sister can swim in a pool every day here. At home she is absolutely house > > > > bound in the winter. Believe me when I say that I am doing it for my sister, > > > > I would much rather be at my own home, snow and all. > > > > Of course my big concern is her medication and the cost. I could not possibly > > > > afford to pay it even for a month. > > > > & Chrissie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 I know jean. Obviously I am the one who screw up in writing:) I am the patient. Like I said a bit earlier the question in my first posting are ones that the state most likely believes, not me. If it wasn't for my husband I too would be in a nursing home. I have no parents, no one. I wrote " sorry. that is how the state and medical people most likely view that action. " sorry about the miscommunication. nancy Macklockj@... wrote: > > , > I am STILL with her 24/7. I did not mean to imply that her 91 year old aunt > took care of her. What I meant was.....it is another pair of ears, another > pair of eyes and it does provide me with a little break from the never-ending > questions. > Yes, she is medically fragile, as any SDS/MSA patient is, plus she has other > unrelated conditions associated with Down's. > She does meet the criteria for nursing home eligibility and I hope that it > doesn't ever come to that. In an effort to keep her home, I am paid a very > small amount for agreeing to care for her at home. I am eternally grateful > for it too. I am also a CNA and have worked for many years with people with > disabilites. > Does being medical fragile mean that one can never leave home. As everyone on > this list will attest to, it is so important to keep moving both for mind as > well as the body. > We have to travel from Maine to Massachusetts to find a doctor that is > knowledgeable about MSA and I have been told that they " don't want to hear > about that. " > Pardon me if I misled you by having you think my aunt was provideing care for > her, she has the place and we have been invited for what was supposed to be a > vacation. > I think now that we shall have to return to Maine. It will be a hard one to > explain to poor Chrissie. > & Chrissie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 I know jean. Obviously I am the one who screw up in writing:) I am the patient. Like I said a bit earlier the question in my first posting are ones that the state most likely believes, not me. If it wasn't for my husband I too would be in a nursing home. I have no parents, no one. I wrote " sorry. that is how the state and medical people most likely view that action. " sorry about the miscommunication. nancy Macklockj@... wrote: > > , > I am STILL with her 24/7. I did not mean to imply that her 91 year old aunt > took care of her. What I meant was.....it is another pair of ears, another > pair of eyes and it does provide me with a little break from the never-ending > questions. > Yes, she is medically fragile, as any SDS/MSA patient is, plus she has other > unrelated conditions associated with Down's. > She does meet the criteria for nursing home eligibility and I hope that it > doesn't ever come to that. In an effort to keep her home, I am paid a very > small amount for agreeing to care for her at home. I am eternally grateful > for it too. I am also a CNA and have worked for many years with people with > disabilites. > Does being medical fragile mean that one can never leave home. As everyone on > this list will attest to, it is so important to keep moving both for mind as > well as the body. > We have to travel from Maine to Massachusetts to find a doctor that is > knowledgeable about MSA and I have been told that they " don't want to hear > about that. " > Pardon me if I misled you by having you think my aunt was provideing care for > her, she has the place and we have been invited for what was supposed to be a > vacation. > I think now that we shall have to return to Maine. It will be a hard one to > explain to poor Chrissie. > & Chrissie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 & Chrissie My guess is that you will have to switch it to Florida. As Pam says call Senator Snowe or your Maine Representative and talk to them. They will have someone familiar with the rules and be able to cut red tape. Take care, Bill and Charlotte ------------------------------------------------------------- Macklockj@... wrote: > I care for my sister 24/7 and she has Down Syndrome and SDS/MSA. She lives > with me and I can no longer work and must pay my own insurance etc. > She receives medicaid and ssi from the State of Maine and SS and believe me > it is not very much. > Our parents are both deceased and I am her legal guardian. Hope I haven't > lost you yet. > Here's my question...... because my sister is petrified of walking on snow > and ice (always has been) and because we are able to stay with a 91 aunt in > Florida, we have come here for a vacation for 6 weeks. I just found out that > medicaid is dropping her because we have left the state. How can this be?????? > Even though my aunt is 91, she is the ONLY source of respite that I get. > My sister can swim in a pool every day here. At home she is absolutely house > bound in the winter. Believe me when I say that I am doing it for my sister, > I would much rather be at my own home, snow and all. > Of course my big concern is her medication and the cost. I could not possibly > afford to pay it even for a month. > I am sorry that this is so long and I am not looking for pity, I am just out > of solutions and was hoping someone might have some answers. > Again, thanks for being here, you all are my lifeline. > & Chrissie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 & Chrissie My guess is that you will have to switch it to Florida. As Pam says call Senator Snowe or your Maine Representative and talk to them. They will have someone familiar with the rules and be able to cut red tape. Take care, Bill and Charlotte ------------------------------------------------------------- Macklockj@... wrote: > I care for my sister 24/7 and she has Down Syndrome and SDS/MSA. She lives > with me and I can no longer work and must pay my own insurance etc. > She receives medicaid and ssi from the State of Maine and SS and believe me > it is not very much. > Our parents are both deceased and I am her legal guardian. Hope I haven't > lost you yet. > Here's my question...... because my sister is petrified of walking on snow > and ice (always has been) and because we are able to stay with a 91 aunt in > Florida, we have come here for a vacation for 6 weeks. I just found out that > medicaid is dropping her because we have left the state. How can this be?????? > Even though my aunt is 91, she is the ONLY source of respite that I get. > My sister can swim in a pool every day here. At home she is absolutely house > bound in the winter. Believe me when I say that I am doing it for my sister, > I would much rather be at my own home, snow and all. > Of course my big concern is her medication and the cost. I could not possibly > afford to pay it even for a month. > I am sorry that this is so long and I am not looking for pity, I am just out > of solutions and was hoping someone might have some answers. > Again, thanks for being here, you all are my lifeline. > & Chrissie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 Hi Carol, Yes, apparently the rule is that you must NEVER leave the state in which you live and receive medicaid from. Every state adheres to their own rules as far as I can make out. There is a possibility of an appeal, but the fact remains that we have left the state. It stinks. & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 Hi Carol, Yes, apparently the rule is that you must NEVER leave the state in which you live and receive medicaid from. Every state adheres to their own rules as far as I can make out. There is a possibility of an appeal, but the fact remains that we have left the state. It stinks. & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 Hi Carol, Yes, apparently the rule is that you must NEVER leave the state in which you live and receive medicaid from. Every state adheres to their own rules as far as I can make out. There is a possibility of an appeal, but the fact remains that we have left the state. It stinks. & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 That is TERRIBLE! Have you tried calling and simply explaining the situation? Is there a written set of rules you are supposed to abide by to continue medicaid coverage? Can you ask for a hearing? I am SO furious to hear that they are trying to do this to you! If all else fails, hire a lawyer. Carol & Rob > > I care for my sister 24/7 and she has Down Syndrome and SDS/MSA. She lives > with me and I can no longer work and must pay my own insurance etc. > She receives medicaid and ssi from the State of Maine and SS and believe me > it is not very much. > Our parents are both deceased and I am her legal guardian. Hope I haven't > lost you yet. > Here's my question...... because my sister is petrified of walking on snow > and ice (always has been) and because we are able to stay with a 91 aunt in > Florida, we have come here for a vacation for 6 weeks. I just found out that > medicaid is dropping her because we have left the state. How can this be?????? > Even though my aunt is 91, she is the ONLY source of respite that I get. > My sister can swim in a pool every day here. At home she is absolutely house > bound in the winter. Believe me when I say that I am doing it for my sister, > I would much rather be at my own home, snow and all. > Of course my big concern is her medication and the cost. I could not possibly > afford to pay it even for a month. > I am sorry that this is so long and I am not looking for pity, I am just out > of solutions and was hoping someone might have some answers. > Again, thanks for being here, you all are my lifeline. > & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2001 Report Share Posted February 21, 2001 That is TERRIBLE! Have you tried calling and simply explaining the situation? Is there a written set of rules you are supposed to abide by to continue medicaid coverage? Can you ask for a hearing? I am SO furious to hear that they are trying to do this to you! If all else fails, hire a lawyer. Carol & Rob > > I care for my sister 24/7 and she has Down Syndrome and SDS/MSA. She lives > with me and I can no longer work and must pay my own insurance etc. > She receives medicaid and ssi from the State of Maine and SS and believe me > it is not very much. > Our parents are both deceased and I am her legal guardian. Hope I haven't > lost you yet. > Here's my question...... because my sister is petrified of walking on snow > and ice (always has been) and because we are able to stay with a 91 aunt in > Florida, we have come here for a vacation for 6 weeks. I just found out that > medicaid is dropping her because we have left the state. How can this be?????? > Even though my aunt is 91, she is the ONLY source of respite that I get. > My sister can swim in a pool every day here. At home she is absolutely house > bound in the winter. Believe me when I say that I am doing it for my sister, > I would much rather be at my own home, snow and all. > Of course my big concern is her medication and the cost. I could not possibly > afford to pay it even for a month. > I am sorry that this is so long and I am not looking for pity, I am just out > of solutions and was hoping someone might have some answers. > Again, thanks for being here, you all are my lifeline. > & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 and Chrissie, You can still talk to your Senators and Congressman. They may be able to pull strings that you can't. I know that Medicare has a rule that you can not be held accountable for bills which were authorized by a doctor and you had reasonabe assumption would be paid. Maybe you can squeeze by on that. If not, you can reapply in Florida, or Maine when you get back. Don't give up! Senator Snowe is known to sponsor legislation of this type of thing. They are writing rules like this was horse and buggy days, with airline and trains - travel is possible even for handicapped. It is STUPID for a Downs patient not to be able to get support. Take care, Bill and Charlotte ============================= Macklockj@... wrote: > Hi Carol, > Yes, apparently the rule is that you must NEVER leave the state in which you > live and receive medicaid from. Every state adheres to their own rules as far > as I can make out. > There is a possibility of an appeal, but the fact remains that we have left > the state. > It stinks. > & Chrissie > > Quote Link to comment Share on other sites More sharing options...
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