Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 , I live in Illinois, and it's a program through the state. It's for disabled people who might otherwise have to be placed in a nursing home type of facility because they cannot care for themselves enough at home to live independently. It's paid for by the state. We currently qualify because we just bought a house and have depleted our money assets. Unfortunately, in another year or less my husband's 401k will put us up over the limit. We won't be able to afford to pay for assistance ourselves, so my life will become very tough! But we will cross that bridge when we get there I guess... > > >, > >I qualified for 25hr/wk (5hr/day) of in-home help. I get help with > >laundry, meal prep, vacuuming, cleaning, driving me to dr appts, and > >a few other things. They are technically supposed to only help ME, > >but the girls I had loved kids and helped give my girls (ages 1 and > >2.5) their baths and would take them on walks outside. I have been > >really happy with my personal assistant so far. But unfortunately, > >she is a college student and just left on Friday to go back to > >school out-of-state. So now I am in the process of finding > >another. I was told (or warned, rather) NOT to go with people who > >are on the " list " of available personal assistants given to me by > >the CIL. Three separate sources told me that I am much better off > >having a friend, family member, or a close acquaintance work for me, > >because oftentimes the wrong kind of people sign up for the personal > >assistant program just to take advantage of the disabled. I'm not > >trying to be cynical after hearing the warnings from several > >different people, as I am sure that many people on those lists are > >great. But with me being alone at home all day with 2 small > >children, I'd rather be safe than sorry! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 Wow, , I didn't realize that you are in Illinois. Are you by any chance in the Chicago area, and is the organization that helped you " Access Living " ? I had a very hard time getting a personal assistant, even when I finally found out about Access Living and asked them for help with the state. What I needed and simply could not get (and what I STILL need to some extent, truth be told!) was someone to clean my apartment, especially during the post-op period. The whole thing seemed set up for sending someone to do more " medical " things, and for many more hours a week than I needed. It was very disappointing and frustrating. Best, > > > > >, > > >I qualified for 25hr/wk (5hr/day) of in-home help. I get help with > > >laundry, meal prep, vacuuming, cleaning, driving me to dr appts, > and > > >a few other things. They are technically supposed to only help ME, > > >but the girls I had loved kids and helped give my girls (ages 1 > and > > >2.5) their baths and would take them on walks outside. I have been > > >really happy with my personal assistant so far. But unfortunately, > > >she is a college student and just left on Friday to go back to > > >school out-of-state. So now I am in the process of finding > > >another. I was told (or warned, rather) NOT to go with people who > > >are on the " list " of available personal assistants given to me by > > >the CIL. Three separate sources told me that I am much better off > > >having a friend, family member, or a close acquaintance work for > me, > > >because oftentimes the wrong kind of people sign up for the > personal > > >assistant program just to take advantage of the disabled. I'm not > > >trying to be cynical after hearing the warnings from several > > >different people, as I am sure that many people on those lists are > > >great. But with me being alone at home all day with 2 small > > >children, I'd rather be safe than sorry! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 P.S. I also needed rides to doctors but had to cobble together volunteer help from neighbors and religious charities and the like. No one I managed to find under the state program had a driver's license. Also, I tried to find out how I could have someone I knew and liked become my personal assistant, but everyone seemed taken aback by this request. They seemed to think it was highly irregular and sent me bunches of forms for hiring an independent contractor while indicating that this really " was not done. " During the same period, a friend of mine who was becoming severely disabled by diabetes and end-stage renal disease, and who was going blind, was able to get somewhat better help from the state -- somehow -- than I did. Still, I was startled when she told me that the person who, overall, worked out best for her also turned out to be smoking pot with her son. I think this woman may also have stolen small items from her house. I would not want to judge the whole program by my friend's bad experiences or my own, however. I had the sense that there was some fundamental " knack " to accessing the system and making it work for you that I somehow could not develop or even identify. It sounds as if you are a much more savvy consumer than I ever managed to be! Best, > > > > >, > > >I qualified for 25hr/wk (5hr/day) of in-home help. I get help with > > >laundry, meal prep, vacuuming, cleaning, driving me to dr appts, > and > > >a few other things. They are technically supposed to only help ME, > > >but the girls I had loved kids and helped give my girls (ages 1 > and > > >2.5) their baths and would take them on walks outside. I have been > > >really happy with my personal assistant so far. But unfortunately, > > >she is a college student and just left on Friday to go back to > > >school out-of-state. So now I am in the process of finding > > >another. I was told (or warned, rather) NOT to go with people who > > >are on the " list " of available personal assistants given to me by > > >the CIL. Three separate sources told me that I am much better off > > >having a friend, family member, or a close acquaintance work for > me, > > >because oftentimes the wrong kind of people sign up for the > personal > > >assistant program just to take advantage of the disabled. I'm not > > >trying to be cynical after hearing the warnings from several > > >different people, as I am sure that many people on those lists are > > >great. But with me being alone at home all day with 2 small > > >children, I'd rather be safe than sorry! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 Ah, we have a solution to the rides problem in California, called Pari-transit. In Oakland, they come and pick you up in a car or a van (but you have to share the ride with others sometimes). In San Francisco, they sent regular taxis, which weren't as good, because they were miffed that they weren't going to get the tourists with bigger tips. You pay for tickets to take it. NB At 01:19 AM 8/21/2006, you wrote: >P.S. I also needed rides to doctors but had to cobble together >volunteer help from neighbors and religious charities and the like. >No one I managed to find under the state program had a driver's >license. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 , I used to live by my husband's family near Joliet (Shorewood, specifically), but last year my hubby found a job near my parents in the Rockford area. My family is smaller, but much more helpful with me & the kids. So it was a great decision for us to move. And the cost of living is better too! We bought a much bigger house for the same price as the one we sold in Shorewood. We have a local CIL called RAMP, which serves several counties here around Rockford. They are great! But it's the state of IL DHS that evaluated, approved, and pays for my personal assistant. RAMP is the agency that has a list of PAs interested in finding work. A lady from RAMP, a friend that originally told me about the PA program, and the evaluator from DHS all advised me to find a friend or family member to be my PA instead. I can hire anyone that I want (excluding my hubby), they don't have to be on the " list. " In fact, my mom fills in a lot when my PA is gone, and so I put her on the timesheet and she gets paid for helping me. She does it without pay too, when I need extra stuff, but it's nice to be able to pay her sometimes! Are you actually in Chicago, or are you in a suburb? > > > > > > >, > > > >I qualified for 25hr/wk (5hr/day) of in-home help. I get help > with > > > >laundry, meal prep, vacuuming, cleaning, driving me to dr > appts, > > and > > > >a few other things. They are technically supposed to only help > ME, > > > >but the girls I had loved kids and helped give my girls (ages 1 > > and > > > >2.5) their baths and would take them on walks outside. I have > been > > > >really happy with my personal assistant so far. But > unfortunately, > > > >she is a college student and just left on Friday to go back to > > > >school out-of-state. So now I am in the process of finding > > > >another. I was told (or warned, rather) NOT to go with people > who > > > >are on the " list " of available personal assistants given to me > by > > > >the CIL. Three separate sources told me that I am much better > off > > > >having a friend, family member, or a close acquaintance work > for > > me, > > > >because oftentimes the wrong kind of people sign up for the > > personal > > > >assistant program just to take advantage of the disabled. I'm > not > > > >trying to be cynical after hearing the warnings from several > > > >different people, as I am sure that many people on those lists > are > > > >great. But with me being alone at home all day with 2 small > > > >children, I'd rather be safe than sorry! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 , I think to be eligible for this program, you have to be considered at risk of being permanently placed into a nursing home. I am physically unable to fix meals for myself, and cannot do laundry, cleaning, etc. It's meant to help people to be able to stay living at their home instead of living in a medical facility. I'm not at all saying that flatback problems don't cause long-term disability, but I personally think they probably have a list of " eligible " conditions and secondary progressive MS is on it. They probably assume that a revision surgery " fixes " you. So they assume you'd only need short-term special care, and therefore you're not eligible under their standards. So even though your personal case may be different, they (and many other ignorant people) just assume that you are recovering and will be just fine shortly. I also think that different DHS offices probably work differently from each other. Just like different social security offices may approve applications " easier " or " tougher " than others. Just my opinion though! And like I said earlier, I was strongly encouraged to get someone that I knew to be my personal assistant. One of the people even asked if my mom or any other family lived nearby. I was surprised, because I thought it would look suspicious if I hired my mom to do it. But they said it would be okay. > > > > > > >, > > > >I qualified for 25hr/wk (5hr/day) of in-home help. I get help > with > > > >laundry, meal prep, vacuuming, cleaning, driving me to dr > appts, > > and > > > >a few other things. They are technically supposed to only help > ME, > > > >but the girls I had loved kids and helped give my girls (ages 1 > > and > > > >2.5) their baths and would take them on walks outside. I have > been > > > >really happy with my personal assistant so far. But > unfortunately, > > > >she is a college student and just left on Friday to go back to > > > >school out-of-state. So now I am in the process of finding > > > >another. I was told (or warned, rather) NOT to go with people > who > > > >are on the " list " of available personal assistants given to me > by > > > >the CIL. Three separate sources told me that I am much better > off > > > >having a friend, family member, or a close acquaintance work > for > > me, > > > >because oftentimes the wrong kind of people sign up for the > > personal > > > >assistant program just to take advantage of the disabled. I'm > not > > > >trying to be cynical after hearing the warnings from several > > > >different people, as I am sure that many people on those lists > are > > > >great. But with me being alone at home all day with 2 small > > > >children, I'd rather be safe than sorry! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 , We have paratransit programs here as well. My neurologist is 2 hours away though, so I wouldn't be able to use it. The doctors in my town are all quacks and don't specialize in MS (imagine trying to get a regular ortho to do your flatback surgery...) so I see one in Chicago who does tons of clinical trials. Also, I have a 1yr old & a 2.5yr old - paratransit can't haul them around because of carseat issues, and because they don't haul families around, just the disabled person. And the paratransit here is pretty pricey! I can't remember exactly how much, but I remember being surprised when I looked into it last year. > > >P.S. I also needed rides to doctors but had to cobble together > >volunteer help from neighbors and religious charities and the like. > >No one I managed to find under the state program had a driver's > >license. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 -- Yes, I am aware of the requirement for the program, and I certainly did not mean to put myself in the same category as someone with progressive MS who is confined to a wheel chair. In fact, I discourage people in this group from making any comparisons or judgments regarding respective degrees of disability. I am not entirely clear whether you yourself have dealt with flatback syndrome or revision surgery. If not, I am wondering if perhaps you may do not fully realize how seriously disabled some of our members are -- not all of us by any means, but a significant percentage of our group. To use my own situation as an example: Now, admittedy, despite being considered totally and permanently disabled, I do manage to fix meals for myself -- not that I do much if any real cooking anymore. The other tasks you enumerated, however, are pretty much beyone my capacities. In the more advanced stages of my flatback syndrome (such as shortly before my initial 18-hour revision surgery in 2001), I had become grossly and visibly deformed. Structurally, my torso was at a 90- degree angle to the ground, and I walked hunched over in this position and leaning for dear life on my walker so as not to topple headlong into the sidewalk. After my first revision surgeon worked his surgical magic and radically restructured my spine (an 18- or 19-hour deal), I did manage to receive services from the state for a short time before more or less giving up on this program and relying more heavily on family and neighbors. Especially during this period, I was unquestionably in danger of ending up in a nursing home! The danger did abate somewhat as I recovered from surgery and managed to cobble together a bunch of personal solutions or stopgap measures for getting through the day with help from others. I felt great when I was finally able to give up the walker. Perhaps this was a mite premature, considering I did go barreling facedown into the sidewalk several times after tripping on uneven pavement. Because I was now fused to S-1 and could not break my fall in any reliable or adequate way, and because I was showing some degree of recurrent or residual flatback between 2001 and my most recent four revision surgeries in 2004, these falls were pretty bad. When my face hit the pavement, I got some nasty facial cuts and bruises, and on one occasion gave myself a black eye. Please understand that I would never contend I have something as " bad, " as you do, or disabling in a truly comparable or similar way. I am just trying to explain, in case you may not have realized this, that flatback syndrome can actually be profoundly disabling -- and in fact IS profoundly disabling and continuously disabling to some of our members -- to the point at which the nursing-home scenario is an all-too-realistic fear or prospect in our lives! The pain that CAN accompany a flatback deformity, or which MAY persist or recur after revision (particularly among those of us who have had multiple revision procedures) may regularly hit 8 or 9 on that familiar 10-point scale. As you undoubtedly know from reading these posts, some of us would be nearly or totally immobilized without the most potent prescription pain medication, which we must take pretty much 24/7 -- whether orally, transdermally, or, as in my case, intrathecally via an infusion pump surgically implanted in an abominal pocket. Regarding my own ability to avoid long-term nursing home care, I am very blessed indeed. Despite my difficulty in figuring out " the system " in my area and my failure to obtain optimal help from the State of Illinois (or at least from the particular, applicable office of Illinois DHS -- apparently one that may differe in some ways from you own local office, as you point out), I am fortunate to have a young, strong family member living with me at present who has had time to help me in substantive and concrete ways. My son does all our laundry, for instance (as did his dad when I was still living with my husband -- I could not physically handle laundry for some years before my flatback syndrome reached its most severe level; in fact, come to think of it, not since my second spinal fusion and first fusion with instrumentation, in 1986, even though I did not become totally disabled until 1997 or so -- and boy, did THAT come as a shock; in fact, it still does!) I can not really do more than bare-minimum housework. All too often, I strain my back trying. Matt, my son, and I were actually scrounging up money we could ill afford to pay for someone from a house-cleaning/maid service to clean our apartment bi-weekly, but recently we have had to cut this out for financial reasons. Hence I have spent part of the summer giving my son a kind of intensive informal tutorial in such subjects as Floor Mopping 101! He also does stuff like carrying all the garbage and trash down several flights to the dumpster -- otherwise, I do not know what I would do, exactly. I was blessed that Matt chose to attend college close to home, at Northwestern University, and he often came home from the dorms on weekends. I provided the frozen pizzas, couch for studying, good TV, etc., and Matt carried all those bags down for me. I can still remember the terror I sometimes felt around, say, Thursday (particularly during the snowiest and iciest weeks of winter), feeling I HAD to get that garbage out of my kitchen and down the back steps, but knowing that if I tried to do so myself, I would risk my health and safety and possibly even my life! My disability, like that of many others at this group, has been confounded by medical problems other than my spinal deformities per se. You may not always realize this from reading the day-to-day posts, but a number of group members with disabling scoliosis/fixed sagittal imbalance/complications of fusion or revision are also dealing such conditions (many of them scoliosis-related) as additional musculoskeletal or congenital neurologic malformations, Marfan's syndrome, residual damage from poliomyelitis, narcolepsy, advanced arthritic conditions, early and severe osteoporosis, cardio- respiratory conditions, endocrine disorders, etc. And many of us are, like you, responsible for very young children -- or for older children with scoliosis, autism, bipolar disorder, etec., etc.; or, alternatively or in addition, for aging parents, grandparents, or in- laws who are in poor health. I hope I do not sound excessively defensive, and I certainly hope I have not patronized you in any way by recounting so many basic facts of my and some other members' lives with flatback syndrome. I am so glad you are writing to us, and I hope to hear much more about your own life, interests, and experiences! I " kinda " know how I myself get by from one day to the next, but I remain flabbergasted and awe- struck to learn the stories of other brave and amazing Feisty members who post here regularly or occasionally -- now including you! I hope you know that you can always turn to this group for support and caring, and I hope we can provide a resource for you (if only emotional and informational) as you face the renewed challenges created by your husband's 401(k) situation. Best, -- In , " rebeccamaas " <rebeccamaas@...> wrote: > > , > I think to be eligible for this program, you have to be considered > at risk of being permanently placed into a nursing home. I am > physically unable to fix meals for myself, and cannot do laundry, > cleaning, etc. It's meant to help people to be able to stay living > at their home instead of living in a medical facility. I'm not at > all saying that flatback problems don't cause long-term disability, > but I personally think they probably have a list of " eligible " > conditions and secondary progressive MS is on it. They probably > assume that a revision surgery " fixes " you. So they assume you'd > only need short-term special care, and therefore you're not eligible > under their standards. So even though your personal case may be > different, they (and many other ignorant people) just assume that > you are recovering and will be just fine shortly. I also think that > different DHS offices probably work differently from each other. > Just like different social security offices may approve > applications " easier " or " tougher " than others. Just my opinion > though! > And like I said earlier, I was strongly encouraged to get someone > that I knew to be my personal assistant. One of the people even > asked if my mom or any other family lived nearby. I was surprised, > because I thought it would look suspicious if I hired my mom to do > it. But they said it would be okay. > > > > > > > > > > > >, > > > > >I qualified for 25hr/wk (5hr/day) of in-home help. I get help > > with > > > > >laundry, meal prep, vacuuming, cleaning, driving me to dr > > appts, > > > and > > > > >a few other things. They are technically supposed to only > help > > ME, > > > > >but the girls I had loved kids and helped give my girls (ages > 1 > > > and > > > > >2.5) their baths and would take them on walks outside. I have > > been > > > > >really happy with my personal assistant so far. But > > unfortunately, > > > > >she is a college student and just left on Friday to go back to > > > > >school out-of-state. So now I am in the process of finding > > > > >another. I was told (or warned, rather) NOT to go with people > > who > > > > >are on the " list " of available personal assistants given to > me > > by > > > > >the CIL. Three separate sources told me that I am much better > > off > > > > >having a friend, family member, or a close acquaintance work > > for > > > me, > > > > >because oftentimes the wrong kind of people sign up for the > > > personal > > > > >assistant program just to take advantage of the disabled. I'm > > not > > > > >trying to be cynical after hearing the warnings from several > > > > >different people, as I am sure that many people on those > lists > > are > > > > >great. But with me being alone at home all day with 2 small > > > > >children, I'd rather be safe than sorry! > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 -- Yes, I am aware of the requirement for the program, and I certainly did not mean to put myself in the same category as someone with progressive MS who is confined to a wheel chair. In fact, I discourage people in this group from making any comparisons or judgments regarding respective degrees of disability. I am not entirely clear whether you yourself have dealt with flatback syndrome or revision surgery. If not, I am wondering if perhaps you may do not fully realize how seriously disabled some of our members are -- not all of us by any means, but a significant percentage of our group. To use my own situation as an example: Now, admittedy, despite being considered totally and permanently disabled, I do manage to fix meals for myself -- not that I do much if any real cooking anymore. The other tasks you enumerated, however, are pretty much beyone my capacities. In the more advanced stages of my flatback syndrome (such as shortly before my initial 18-hour revision surgery in 2001), I had become grossly and visibly deformed. Structurally, my torso was at a 90- degree angle to the ground, and I walked hunched over in this position and leaning for dear life on my walker so as not to topple headlong into the sidewalk. After my first revision surgeon worked his surgical magic and radically restructured my spine (an 18- or 19-hour deal), I did manage to receive services from the state for a short time before more or less giving up on this program and relying more heavily on family and neighbors. Especially during this period, I was unquestionably in danger of ending up in a nursing home! The danger did abate somewhat as I recovered from surgery and managed to cobble together a bunch of personal solutions or stopgap measures for getting through the day with help from others. I felt great when I was finally able to give up the walker. Perhaps this was a mite premature, considering I did go barreling facedown into the sidewalk several times after tripping on uneven pavement. Because I was now fused to S-1 and could not break my fall in any reliable or adequate way, and because I was showing some degree of recurrent or residual flatback between 2001 and my most recent four revision surgeries in 2004, these falls were pretty bad. When my face hit the pavement, I got some nasty facial cuts and bruises, and on one occasion gave myself a black eye. Please understand that I would never contend I have something as " bad, " as you do, or disabling in a truly comparable or similar way. I am just trying to explain, in case you may not have realized this, that flatback syndrome can actually be profoundly disabling -- and in fact IS profoundly disabling and continuously disabling to some of our members -- to the point at which the nursing-home scenario is an all-too-realistic fear or prospect in our lives! The pain that CAN accompany a flatback deformity, or which MAY persist or recur after revision (particularly among those of us who have had multiple revision procedures) may regularly hit 8 or 9 on that familiar 10-point scale. As you undoubtedly know from reading these posts, some of us would be nearly or totally immobilized without the most potent prescription pain medication, which we must take pretty much 24/7 -- whether orally, transdermally, or, as in my case, intrathecally via an infusion pump surgically implanted in an abominal pocket. Regarding my own ability to avoid long-term nursing home care, I am very blessed indeed. Despite my difficulty in figuring out " the system " in my area and my failure to obtain optimal help from the State of Illinois (or at least from the particular, applicable office of Illinois DHS -- apparently one that may differe in some ways from you own local office, as you point out), I am fortunate to have a young, strong family member living with me at present who has had time to help me in substantive and concrete ways. My son does all our laundry, for instance (as did his dad when I was still living with my husband -- I could not physically handle laundry for some years before my flatback syndrome reached its most severe level; in fact, come to think of it, not since my second spinal fusion and first fusion with instrumentation, in 1986, even though I did not become totally disabled until 1997 or so -- and boy, did THAT come as a shock; in fact, it still does!) I can not really do more than bare-minimum housework. All too often, I strain my back trying. Matt, my son, and I were actually scrounging up money we could ill afford to pay for someone from a house-cleaning/maid service to clean our apartment bi-weekly, but recently we have had to cut this out for financial reasons. Hence I have spent part of the summer giving my son a kind of intensive informal tutorial in such subjects as Floor Mopping 101! He also does stuff like carrying all the garbage and trash down several flights to the dumpster -- otherwise, I do not know what I would do, exactly. I was blessed that Matt chose to attend college close to home, at Northwestern University, and he often came home from the dorms on weekends. I provided the frozen pizzas, couch for studying, good TV, etc., and Matt carried all those bags down for me. I can still remember the terror I sometimes felt around, say, Thursday (particularly during the snowiest and iciest weeks of winter), feeling I HAD to get that garbage out of my kitchen and down the back steps, but knowing that if I tried to do so myself, I would risk my health and safety and possibly even my life! My disability, like that of many others at this group, has been confounded by medical problems other than my spinal deformities per se. You may not always realize this from reading the day-to-day posts, but a number of group members with disabling scoliosis/fixed sagittal imbalance/complications of fusion or revision are also dealing such conditions (many of them scoliosis-related) as additional musculoskeletal or congenital neurologic malformations, Marfan's syndrome, residual damage from poliomyelitis, narcolepsy, advanced arthritic conditions, early and severe osteoporosis, cardio- respiratory conditions, endocrine disorders, etc. And many of us are, like you, responsible for very young children -- or for older children with scoliosis, autism, bipolar disorder, etec., etc.; or, alternatively or in addition, for aging parents, grandparents, or in- laws who are in poor health. I hope I do not sound excessively defensive, and I certainly hope I have not patronized you in any way by recounting so many basic facts of my and some other members' lives with flatback syndrome. I am so glad you are writing to us, and I hope to hear much more about your own life, interests, and experiences! I " kinda " know how I myself get by from one day to the next, but I remain flabbergasted and awe- struck to learn the stories of other brave and amazing Feisty members who post here regularly or occasionally -- now including you! I hope you know that you can always turn to this group for support and caring, and I hope we can provide a resource for you (if only emotional and informational) as you face the renewed challenges created by your husband's 401(k) situation. Best, -- In , " rebeccamaas " <rebeccamaas@...> wrote: > > , > I think to be eligible for this program, you have to be considered > at risk of being permanently placed into a nursing home. I am > physically unable to fix meals for myself, and cannot do laundry, > cleaning, etc. It's meant to help people to be able to stay living > at their home instead of living in a medical facility. I'm not at > all saying that flatback problems don't cause long-term disability, > but I personally think they probably have a list of " eligible " > conditions and secondary progressive MS is on it. They probably > assume that a revision surgery " fixes " you. So they assume you'd > only need short-term special care, and therefore you're not eligible > under their standards. So even though your personal case may be > different, they (and many other ignorant people) just assume that > you are recovering and will be just fine shortly. I also think that > different DHS offices probably work differently from each other. > Just like different social security offices may approve > applications " easier " or " tougher " than others. Just my opinion > though! > And like I said earlier, I was strongly encouraged to get someone > that I knew to be my personal assistant. One of the people even > asked if my mom or any other family lived nearby. I was surprised, > because I thought it would look suspicious if I hired my mom to do > it. But they said it would be okay. > > > > > > > > > > > >, > > > > >I qualified for 25hr/wk (5hr/day) of in-home help. I get help > > with > > > > >laundry, meal prep, vacuuming, cleaning, driving me to dr > > appts, > > > and > > > > >a few other things. They are technically supposed to only > help > > ME, > > > > >but the girls I had loved kids and helped give my girls (ages > 1 > > > and > > > > >2.5) their baths and would take them on walks outside. I have > > been > > > > >really happy with my personal assistant so far. But > > unfortunately, > > > > >she is a college student and just left on Friday to go back to > > > > >school out-of-state. So now I am in the process of finding > > > > >another. I was told (or warned, rather) NOT to go with people > > who > > > > >are on the " list " of available personal assistants given to > me > > by > > > > >the CIL. Three separate sources told me that I am much better > > off > > > > >having a friend, family member, or a close acquaintance work > > for > > > me, > > > > >because oftentimes the wrong kind of people sign up for the > > > personal > > > > >assistant program just to take advantage of the disabled. I'm > > not > > > > >trying to be cynical after hearing the warnings from several > > > > >different people, as I am sure that many people on those > lists > > are > > > > >great. But with me being alone at home all day with 2 small > > > > >children, I'd rather be safe than sorry! > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2006 Report Share Posted August 22, 2006 , No I don't think that at all. And I apologize, as I stated earlier I can never seem to express clearly/exactly/eloquently what I mean! What I was trying to say was that I think the State probably looks at flatback as something " fixable " or temporary and may not approve those people for in-home help as readily as someone with a different or more " mainstream/accepted " disabling condition. It's not the way that I personally think about it, but it's my opinion of how the State views flatback when reviewing disability applications. When I was on a scoliosis list a few years ago (which I think you, Racine, Twisted Sister, Ledger, and a few others were on at one time - there was the mit.edu one, then it switched to a one), I remember one of the biggest insults was how uninformed people and even doctors considered the regular original surgeries as complete fixes. They would say that you were done, as good as new, and go on with your lives - maybe with a few physical restrictions. Yet the doctors didn't want to admit that so many people were having major problems years later. I wasn't trying to judge anyone based on " degrees " of disability, so I'm sorry if anyone took it like that. I have heard your personal story several times , even a number of years ago on one of the other lists. And I don't doubt at all that you physically qualify for the standards of in-home care from DHS. To say you've had a rough time with it all is a horrible understatement. I wouldn't wish that on anyone. Your attitude after all you've been through is just amazing to me. I was meaning to point out that I think the dhs (and also the soc sec disability office) has a list of conditions that they think should qualify. Unfortunately, scoliosis - and therefore in their minds scoliosis-related problems like flatback - isn't on their list, so people in your situation don't qualify very easily. Does that make sense to you? I hope it comes across the way I mean it to. I guess I'm trying to say that you probably have to jump through a lot more hoops to get approved than people with other conditions. These agencies may look at flatback the same way that naive people looked at scoliosis for many years - a somewhat temporary problem, surgically fixable and you're " good as new " . That whole idea infuriates me, especially when I had some ignorant person tell me a few years ago that I was LUCKY to have a " new back " (what the heck did they think I had done??) - because they were currently having some back problems themselves and wish they could go get it all " fixed " like me. I asked a friend about a comment she made like that, and she actually thought that I had gotten a nice straight and perfect back from the surgery years ago and now would never have to deal with back pain or other back problems that " normal " people have to deal with! She wasn't being mean, she is a really good friend and was just insanely ignorant about it. Luckily, I have permanent possession of all of my x-rays, and then next time she came over I showed her what they looked like. So once again I apologize if my previous message sounded rude or insensitive to those with flatback. I was trying to state how I think the various disability agencies look at things, not the way that " I " personally think. And kudos to your son for all he does for you, . My husband is a huge help to me, and I don't know what I would do without him. P.S. As I posted before, I've never been diagnosed with flatback, and have no idea if I have it or not. I was fused t4-l4 in 1989 - curves were both near 70 and corrected to the mid 50s. I'm 30 now and even before MS had considerable back pain which is unexplained - muscle relaxants (regular and neurological), naproxen, ibuprofen, & vicodin don't touch it. My doc won't prescribe anything stronger for me than the vicodin right now. I couldn't stand up straight even before the MS diagnosis. I have some doubts that all of my pain & mobility issues are entirely MS-related, so I am trying to stay as informed as possible on flatback since a few of my problems seem consistent with that. I was actually trying to look into it a few years ago as I was first getting diagnosed with MS, thinking maybe I had it, instead of or in addition to MS. In recent years, MS problems have overwhelmed me and had to take precedence medically - so I haven't had the time, money, or energy left to look at any possible spinal issues. > > -- > > Yes, I am aware of the requirement for the program, and I certainly > did not mean to put myself in the same category as someone with > progressive MS who is confined to a wheel chair. In fact, I > discourage people in this group from making any comparisons or > judgments regarding respective degrees of disability. > > I am not entirely clear whether you yourself have dealt with > flatback syndrome or revision surgery. If not, I am wondering if > perhaps you may do not fully realize how seriously disabled some of > our members are -- not all of us by any means, but a significant > percentage of our group. > Quote Link to comment Share on other sites More sharing options...
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