I'm thinking he'll need a staff of 15 or so that will probably all work a few hours a week. At least that is the way we cobble the care together in my state. Generaally, consumers with disabilities are given the discretion to hire, train, schedule and fire their own personal care attendants, the thinking being that no one knows what the person with a disability needs better than the person him/herself. If he needs more than PCA like private duty nursing, the training is obviously much more complex. But PCAs are trained by the consumer to do ADLs and IADLs. It's easy-peasy work, but not valued or well-compensated. This approach is in direct response to years of nursing facility warehousing of working age persons with disabilities against their will. This type of care is actually cheaper than NF admission.
The upside of this is that if he can manage a staff of 15+ and still manage to graduate, that is an amazing feat and should really say something to any potential employer about his ability to manage tough projects and deliver. Unfotunately, those of us with disabilities have a 70% UNemployment rate (census data) regardless of educational level, even 25 years after the passing of the law that was meant to protect our rights. This high rate of unemployment isn't because we don't want to work, or can't do the job. It's because you can't legislate hearts and minds. Few employers are willing to take chances on us even though the data shows that those of us who are fortunate enough to work are hard working, loyal employees. Sad, really.
This really doesn't make sense to me. You need to go with the school that can be flexible in your accomodations. Often smaller, commuter schools are a better choice because you can live at home and not have to worry about needing accessible housing on campus. You really need to keep your options open, my friend.
That's not what this is about Mgodiscgolfer. There but for the grace of God go you or your family. SSDI doesn't pay tuition. It doesn't even pay for the types of supports he needs. You don't know what you are talking about.
I live in a blue state with ridiculously high taxes and waste. I can think of no better place for my money to go than in helping someone get the highly expensive care they need to live, work, and learn in the community. It beats being warehoused in a nursing facility both on the moral ground, but also because providing care in the community is cheaper and results in better outcomes.
Hey man, how brutally honest can I be with you? I'm assuming since you want to do engin at Michigan you can handle it. And there's the fact that you're on MGoBlog, which has an inherent blunt talk element to it.
Your buddy the writer doesn't know squat about living with a lifelong disability. If you were the parent of an adorable kid with some horrible disease who desparately needed some expensive treatment and you had no other hope, this would be the strategy I'd advise you to take because no one can resist throwing money at a situation like that.
But us? Adults with neurological conditions who walk funny or talk funny or don't walk at all? Larger society doesn't really care. Larger society still thinks we are warehoused in nursing facilities. They will give us lip services, but hardly anything ever comes of it.
Don't write Gov. Snyder. He doesn't give a shit. He wants to cut benefits for persons with disabilities. If you want real long term quality of life, you need to move to get the hell out of Michigan and to a blue state that has a robust Medicaid wraparound service waiver for persons with disabilities which will still allow you to work and make a living while providing the cost prohibitive care that will keep you out of a nursing facility. Massachusetts, Connecticuit, Oregon, and Cali all have these services. But I digress.....
Instead of writing Governor Snyder why don't you call up AACIL and ask them who is the best person to talk to about resolving a fiscal intermediary dispute. Because that's what your real problem is here. The money for your care comes from the state, but is dispersed at the county level. That is what Macomb and Washtenaw are fighting about. My sense is that it will be the Michigan Medicaid Ombudsman (may not go by that exact name) or someone in the State Disability Office. My first inclination would be to google all of this for you, but you want to go to Michigan-- you can handle it yourself.
As a person with a disability you need to be highly proactive, you need to work 10x harder to get what everyone else takes for granted. Do yourself a favor and work 10x smarter, too. Don't write letters to people who don't care and who are actively working against you. And if this stuff makes your blood boil like it does mine, maybe give up engin and come join our fight for change. I never in a million years thought I would be working in health policy advocating and building better home and community based supports. But I knew I needed to learn my shit and do my part to make my own life better. Maybe take some time to learn how this stuff works, at the very least, so you know what you're in for for the rest of your life.
All this being said you can do this. It's very possible. You just have to be very, very realistic about your own limitations and and the limitations that will be placed upon you (wrongly, but it will happen) by society. Work within those confines and then bust out when you have your plan.
And if you do matriculate at UM, when you're attending your first home game in those generous wheelchair accessible spaces near your friends, maybe give a general nod of thanks to the universe to those of us who came before you a few very short years ago who held the unviersity's feet to the fire and got the DOJ involved when they were continuing to put profits before people and refusing to have the correct number of accessible seats. You're welcome. Go Blue.
Tl:dr-- This shit is complicated. There is no "system". He's for real.
Replying to this because from your screen name I think you might be in health care and just want to dispel a myth. This guy is real, as others have said. But more importantly, the "system" you're referring to doesn't really exist the way that people who aren't familiar with this stuff think it does. There is no one stop shop for this, no office that provides all services.
Providing home and community based supports is ridiculously hard and complicated work. It's a highly fragmented and siloed system that has multipule funding streams. It's further complicated because it's Medicaid-based and therefore varies from state to state. I have two degrees from Michigan and studied this stuff at SPH under faculty that are at the cutting edge, and some days even I'm in over my head.
So, his grasp of this or lack of should not be correlated with his legitimacy.
From a fellow Wolverine and wheelchair user. I've been lurking here for years. This is the thread that's making me post. After this, back to lurkdom.
I know what it's like to navigate campus in a wheelchair, although my disability is a bit different from yours. I also work in health policy and have extensive experience with the funding structures behind the care you are looking for. First off, I am not surprised that you are having trouble coordinating services in Macomb, when you're going to be living in Washtenaw. Since these services are county based, you need to be talking to agencies in Washtenaw county. Call the Ann Arbor Center for Independent Living, and then call the Office for Students with Disabilities on campus. AACIL is great, in my experience. Back when I was on campus getting my degrees(1997-2004) the OSD was quite unhelpful. Hopefully they've imporved.
If you are looking for a few hours of simple PCA care a week, I do know that many nursing, physical therapy, and kinesiology students like to take on this work because it beefs up their CVs for grad school. Your problem may be easily solved by an ad in the Michigan Daily (do they still do classifieds? God, I'm old). This is something that you can and should talk to AACIL and the U-M OSD office about. I am more familiar with the PCA policy in the state where I live, but I believe that Michigan also has a funding stream for you to hire, fire and pay your own PCAs.
Other than that, I'm not sure what the point of your original letter was, except to garner publicity? That's not really going to help you here. You need a boots-on-the-ground plan, even if it means deferring for a year to get your ducks in a row. That includes your personal care ducks and your financial ducks.
Which leads me to my next point, and it is going to be a hard one to read, but please listen with an open mind from someone in a similar situation who has been there. Michigan is a terrible campus to get around in a wheelchair. It is so bad that I seriously considered transfering after my sophomore year, and at times still wish I had, solely because of infrastructure issues. You really need to seek out current students with mobility impairments and find out what's working and what's not. Is paratransit actually reliable? It wasn't when I was there. Do they actually clear curb cuts of snow these days? They didn't when I was there. Is there a mechanism in place for same-day elevator repair? I worked like hell for that once upon a time. You need to talk to students with mobility impairments about this stuff, not administrators. Admins will tell you all is good, because they want your money. Start hunting for current students with insight into this now. And if you don't like what you hear (and as much as it pains me to say this) Alabama, Berkley, and University of Chicago are all exceptional institutions that have a track record of providing services to students with disabilities. Michigan will not hold your hand or be particularly helpful about this stuff. And it sounds like, from your original letter, that frankly you still need some hand holding and service navigation support. And man, I only know this because I was there once. I didn't even know how to service my damn chair when I got to Michigan, and I flunked Chem 215 because I couldn't make it to lecture and study sessions due to weather. There are better places to go for those of us in chairs. I'm sorry, but it's the truth.
And finally, if you aren't driving yet, now is the time to learn if you can. Defer a year to do this if you have to. It will make your life so much easier. Get a driving eval at U-M PM&R, and go from there. Students with disabilities get free blue parking. Driving made grad school an amazing experience because I was no longer stressed out about snowy sidewalks. This is especially important if you are planning on living in E. Quad with the bulk of your classes on N. Campus. You do not want to be at the mercy of paratransit for this, even if they have improved.
Good luck, I want you to succeed wherever you end up. None of these challenges are insurmountable with flexibility and careful planning. You've already been through the worst. The rest of this stuff is just architecture and beaurocracy.
ETA: OP, I just re-read your post and see that you need 24/7 care. I know one person who tried that at UM, and he left after the first semester. Please, please look at the schools I mentioned. Your care needs are so important and exceptional that they must be put ahead of everything else. You can still be a Wolverine after you graduate.... UM has a nice track record of hiring folks with disabilities. Where you go isn't as important as getting the care you need while getting an education. I really don't trust that UM is a flexible enough environment. I'm sorry.
Recent Comments
I'm thinking he'll need a staff of 15 or so that will probably all work a few hours a week. At least that is the way we cobble the care together in my state. Generaally, consumers with disabilities are given the discretion to hire, train, schedule and fire their own personal care attendants, the thinking being that no one knows what the person with a disability needs better than the person him/herself. If he needs more than PCA like private duty nursing, the training is obviously much more complex. But PCAs are trained by the consumer to do ADLs and IADLs. It's easy-peasy work, but not valued or well-compensated. This approach is in direct response to years of nursing facility warehousing of working age persons with disabilities against their will. This type of care is actually cheaper than NF admission.
The upside of this is that if he can manage a staff of 15+ and still manage to graduate, that is an amazing feat and should really say something to any potential employer about his ability to manage tough projects and deliver. Unfotunately, those of us with disabilities have a 70% UNemployment rate (census data) regardless of educational level, even 25 years after the passing of the law that was meant to protect our rights. This high rate of unemployment isn't because we don't want to work, or can't do the job. It's because you can't legislate hearts and minds. Few employers are willing to take chances on us even though the data shows that those of us who are fortunate enough to work are hard working, loyal employees. Sad, really.
This really doesn't make sense to me. You need to go with the school that can be flexible in your accomodations. Often smaller, commuter schools are a better choice because you can live at home and not have to worry about needing accessible housing on campus. You really need to keep your options open, my friend.
That's not what this is about Mgodiscgolfer. There but for the grace of God go you or your family. SSDI doesn't pay tuition. It doesn't even pay for the types of supports he needs. You don't know what you are talking about.
I live in a blue state with ridiculously high taxes and waste. I can think of no better place for my money to go than in helping someone get the highly expensive care they need to live, work, and learn in the community. It beats being warehoused in a nursing facility both on the moral ground, but also because providing care in the community is cheaper and results in better outcomes.
Stop being so callous.
Hey man, how brutally honest can I be with you? I'm assuming since you want to do engin at Michigan you can handle it. And there's the fact that you're on MGoBlog, which has an inherent blunt talk element to it.
Your buddy the writer doesn't know squat about living with a lifelong disability. If you were the parent of an adorable kid with some horrible disease who desparately needed some expensive treatment and you had no other hope, this would be the strategy I'd advise you to take because no one can resist throwing money at a situation like that.
But us? Adults with neurological conditions who walk funny or talk funny or don't walk at all? Larger society doesn't really care. Larger society still thinks we are warehoused in nursing facilities. They will give us lip services, but hardly anything ever comes of it.
Don't write Gov. Snyder. He doesn't give a shit. He wants to cut benefits for persons with disabilities. If you want real long term quality of life, you need to move to get the hell out of Michigan and to a blue state that has a robust Medicaid wraparound service waiver for persons with disabilities which will still allow you to work and make a living while providing the cost prohibitive care that will keep you out of a nursing facility. Massachusetts, Connecticuit, Oregon, and Cali all have these services. But I digress.....
Instead of writing Governor Snyder why don't you call up AACIL and ask them who is the best person to talk to about resolving a fiscal intermediary dispute. Because that's what your real problem is here. The money for your care comes from the state, but is dispersed at the county level. That is what Macomb and Washtenaw are fighting about. My sense is that it will be the Michigan Medicaid Ombudsman (may not go by that exact name) or someone in the State Disability Office. My first inclination would be to google all of this for you, but you want to go to Michigan-- you can handle it yourself.
As a person with a disability you need to be highly proactive, you need to work 10x harder to get what everyone else takes for granted. Do yourself a favor and work 10x smarter, too. Don't write letters to people who don't care and who are actively working against you. And if this stuff makes your blood boil like it does mine, maybe give up engin and come join our fight for change. I never in a million years thought I would be working in health policy advocating and building better home and community based supports. But I knew I needed to learn my shit and do my part to make my own life better. Maybe take some time to learn how this stuff works, at the very least, so you know what you're in for for the rest of your life.
All this being said you can do this. It's very possible. You just have to be very, very realistic about your own limitations and and the limitations that will be placed upon you (wrongly, but it will happen) by society. Work within those confines and then bust out when you have your plan.
And if you do matriculate at UM, when you're attending your first home game in those generous wheelchair accessible spaces near your friends, maybe give a general nod of thanks to the universe to those of us who came before you a few very short years ago who held the unviersity's feet to the fire and got the DOJ involved when they were continuing to put profits before people and refusing to have the correct number of accessible seats. You're welcome. Go Blue.
Tl:dr-- This shit is complicated. There is no "system". He's for real.
Replying to this because from your screen name I think you might be in health care and just want to dispel a myth. This guy is real, as others have said. But more importantly, the "system" you're referring to doesn't really exist the way that people who aren't familiar with this stuff think it does. There is no one stop shop for this, no office that provides all services.
Providing home and community based supports is ridiculously hard and complicated work. It's a highly fragmented and siloed system that has multipule funding streams. It's further complicated because it's Medicaid-based and therefore varies from state to state. I have two degrees from Michigan and studied this stuff at SPH under faculty that are at the cutting edge, and some days even I'm in over my head.
So, his grasp of this or lack of should not be correlated with his legitimacy.
From a fellow Wolverine and wheelchair user. I've been lurking here for years. This is the thread that's making me post. After this, back to lurkdom.
I know what it's like to navigate campus in a wheelchair, although my disability is a bit different from yours. I also work in health policy and have extensive experience with the funding structures behind the care you are looking for. First off, I am not surprised that you are having trouble coordinating services in Macomb, when you're going to be living in Washtenaw. Since these services are county based, you need to be talking to agencies in Washtenaw county. Call the Ann Arbor Center for Independent Living, and then call the Office for Students with Disabilities on campus. AACIL is great, in my experience. Back when I was on campus getting my degrees(1997-2004) the OSD was quite unhelpful. Hopefully they've imporved.
If you are looking for a few hours of simple PCA care a week, I do know that many nursing, physical therapy, and kinesiology students like to take on this work because it beefs up their CVs for grad school. Your problem may be easily solved by an ad in the Michigan Daily (do they still do classifieds? God, I'm old). This is something that you can and should talk to AACIL and the U-M OSD office about. I am more familiar with the PCA policy in the state where I live, but I believe that Michigan also has a funding stream for you to hire, fire and pay your own PCAs.
Other than that, I'm not sure what the point of your original letter was, except to garner publicity? That's not really going to help you here. You need a boots-on-the-ground plan, even if it means deferring for a year to get your ducks in a row. That includes your personal care ducks and your financial ducks.
Which leads me to my next point, and it is going to be a hard one to read, but please listen with an open mind from someone in a similar situation who has been there. Michigan is a terrible campus to get around in a wheelchair. It is so bad that I seriously considered transfering after my sophomore year, and at times still wish I had, solely because of infrastructure issues. You really need to seek out current students with mobility impairments and find out what's working and what's not. Is paratransit actually reliable? It wasn't when I was there. Do they actually clear curb cuts of snow these days? They didn't when I was there. Is there a mechanism in place for same-day elevator repair? I worked like hell for that once upon a time. You need to talk to students with mobility impairments about this stuff, not administrators. Admins will tell you all is good, because they want your money. Start hunting for current students with insight into this now. And if you don't like what you hear (and as much as it pains me to say this) Alabama, Berkley, and University of Chicago are all exceptional institutions that have a track record of providing services to students with disabilities. Michigan will not hold your hand or be particularly helpful about this stuff. And it sounds like, from your original letter, that frankly you still need some hand holding and service navigation support. And man, I only know this because I was there once. I didn't even know how to service my damn chair when I got to Michigan, and I flunked Chem 215 because I couldn't make it to lecture and study sessions due to weather. There are better places to go for those of us in chairs. I'm sorry, but it's the truth.
And finally, if you aren't driving yet, now is the time to learn if you can. Defer a year to do this if you have to. It will make your life so much easier. Get a driving eval at U-M PM&R, and go from there. Students with disabilities get free blue parking. Driving made grad school an amazing experience because I was no longer stressed out about snowy sidewalks. This is especially important if you are planning on living in E. Quad with the bulk of your classes on N. Campus. You do not want to be at the mercy of paratransit for this, even if they have improved.
Good luck, I want you to succeed wherever you end up. None of these challenges are insurmountable with flexibility and careful planning. You've already been through the worst. The rest of this stuff is just architecture and beaurocracy.
ETA: OP, I just re-read your post and see that you need 24/7 care. I know one person who tried that at UM, and he left after the first semester. Please, please look at the schools I mentioned. Your care needs are so important and exceptional that they must be put ahead of everything else. You can still be a Wolverine after you graduate.... UM has a nice track record of hiring folks with disabilities. Where you go isn't as important as getting the care you need while getting an education. I really don't trust that UM is a flexible enough environment. I'm sorry.