Re: No Insurance - social security disability

[Guest guest]

Hi,

I've been on social security disability for over a year now and

would be happy to answer any questions people may have, if I can. I

am disabled due to multiple sclerosis, not scoliosis. However, the

application process is the same, as are many of the " do's & don'ts "

of filling it out.

I also read a website very thoroughly that had tips on filling out

the forms. I could post a link to it if you are interested. Some

of their tips were just common sense, other ones I ignored/didn't

use, but many of them were good ideas that helped me organize and

express my thoughts. I was approved on my first try, with no

lawyer - so I must have done something right!!

>

> Hi again, Marcia --

>

> It occurred to me that you may want to research Medicare and

> Medicaid. Are you totally disabled, and if so, do you qualify for

> Social Security Disability or SSI? If I'm not mistaken, you can

get

> Medicaid as soon as you are approved for SSI (although this may

take

> a bit of time). It probably takes longer to qualify for SSD, and

you

> qualify for this by having paid into Social Security for a certain

> number of " quarters " -- you can probably calculate whether you

> qualify at the www.ssa.gov website. This is likely to yield higher

> benefits than SSI,depending on how long you have worked and paid

> FICA (Social Security and Medicare) taxes. BUT -- and this is a

> big " but " -- if and when you do get approved for SSD, you will

have

> to wait much longer -- two full years -- for coverage under

Medicare.

>

> I wish I knew whether there is any substantial difference,

> nationwide, in whether a doctor takes Medicare or Medicaid. It

used

> to be that certain doctors HAD to take Medicare -- particularly

> those at teaching hospitals, I believe, and anyone affiliated with

a

> hospital that has received government funding. But I actually

began

> hearing several years ago that some doctors at a local

> hospital,which were required to take Medicare, were turning

patients

> away. I hope by now someone has nipped this trend in the bud, but

I

> just don't know.

>

> Assuming you do not qualify for disability, is there ANY way you

can

> get group insurance? Can you pay dues and join a professional or

> occupational organization, union or other trade group, or any kind

> of organization that might offer such insurance? Regrettably, few

if

> any of us can ever qualify for private insurance, given our spinal

> histories. Perhaps we could do so by paying astronomical fees or

> accepting a policy that excluded our preeixsting spinal histories -

-

> those histories being the main reason we need health coverage to

> begin with. It is a rotten and deplorable situation. I do not know

> why 45 million uninsured Americans are not out demonstrating in

the

> streets -- probably because many of them are just too sick to do

so.

>

> If I were you, I would keep at it. Check out some of the resources

> in the Social Security section of our " Files " at this group. (Just

> go to our website and click on " Files, " in the lefthand column of

ay

> page. You may find something in " Links " as well. If you find

> anything outside this group that you would like to upload for the

> benefit of others, please do! Ask any moderator for help with

this.)

>

> Beyond that, you could try making some local calls. Maybe you can

> make a friendly contact at a local hospital -- perhaps in its

Social

> Services area? -- who would have more suggestions for you. I have

> learned over the years that " contacts " are the name of the game in

a

> patchwork health care system with no clear rules for moving around

> the game board, so to speak, and going directly to what you need

> instead of pulling the " Do Not Pass Go " card over and over. (I'll

> skip the stories, but even with two kinds of insurance, I myself

> have drawn that card too many times, especially when I needed an

out-

> of-state revision surgeon.)

>

> It is also extremely helpful to find a friend who will help you,

> perhaps via private email, to get through the Social Security maze

> if that sounds like an option for you. From time to time we have

had

> SSA employees or their relatives participating in this group, and

> they have provided invaluable information to some of us,

> usually " off the record. " You don't need to share any private

> information with us, but I am still somewhat hopeful that someone

in

> this group who knows more than I do may contact you either via

posts

> or email after reading about your plight online.

>

> Here's a slightly wild thought. I don't know where you live, but

is

> there any chance you might be moving to Massachusetts? That state

> seems to have some of the most liberal coverage options in the

> country -- they are really in the vanguard, and I salute them.

> Someone in Boston advised me years ago that if I wanted to have

> surgery with Dr. Rand and get it reimbursed, I should move out

there

> and stay six months! And if I'm not mistaken, one or two people in

> this group have actually done so.

>

> Whatever you do, do not give up. Be stubborn, persistent, and

> assertive! It is likely that you will need even more help with

your

> back as the years go on. We all need to face this squarely -- to

> realize that scoliosis is a lifelong deal, and we need to work the

> system however possible (within the bounds of legality and

morality,

> of course -- no fraud, please, folks!) to ensure that we get the

> care we will continue to need. Not even doctors and experts can

tell

[Guest guest]

Thanks so much for writing, .

I am sure that website would be of interest to many of our members.

What is the url?

Best,

> >

> > Hi again, Marcia --

> >

> > It occurred to me that you may want to research Medicare and

> > Medicaid. Are you totally disabled, and if so, do you qualify

for

> > Social Security Disability or SSI? If I'm not mistaken, you can

> get

> > Medicaid as soon as you are approved for SSI (although this may

> take

> > a bit of time). It probably takes longer to qualify for SSD, and

> you

> > qualify for this by having paid into Social Security for a

certain

> > number of " quarters " -- you can probably calculate whether you

> > qualify at the www.ssa.gov website. This is likely to yield

higher

> > benefits than SSI,depending on how long you have worked and paid

> > FICA (Social Security and Medicare) taxes. BUT -- and this is a

> > big " but " -- if and when you do get approved for SSD, you will

> have

> > to wait much longer -- two full years -- for coverage under

> Medicare.

> >

> > I wish I knew whether there is any substantial difference,

> > nationwide, in whether a doctor takes Medicare or Medicaid. It

> used

> > to be that certain doctors HAD to take Medicare -- particularly

> > those at teaching hospitals, I believe, and anyone affiliated

with

> a

> > hospital that has received government funding. But I actually

> began

> > hearing several years ago that some doctors at a local

> > hospital,which were required to take Medicare, were turning

> patients

> > away. I hope by now someone has nipped this trend in the bud,

but

> I

> > just don't know.

> >

> > Assuming you do not qualify for disability, is there ANY way you

> can

> > get group insurance? Can you pay dues and join a professional or

> > occupational organization, union or other trade group, or any

kind

> > of organization that might offer such insurance? Regrettably,

few

> if

> > any of us can ever qualify for private insurance, given our

spinal

> > histories. Perhaps we could do so by paying astronomical fees or

> > accepting a policy that excluded our preeixsting spinal

histories -

> -

> > those histories being the main reason we need health coverage to

> > begin with. It is a rotten and deplorable situation. I do not

know

> > why 45 million uninsured Americans are not out demonstrating in

> the

> > streets -- probably because many of them are just too sick to do

> so.

> >

> > If I were you, I would keep at it. Check out some of the

resources

> > in the Social Security section of our " Files " at this group.

(Just

> > go to our website and click on " Files, " in the lefthand column

of

> ay

> > page. You may find something in " Links " as well. If you find

> > anything outside this group that you would like to upload for

the

> > benefit of others, please do! Ask any moderator for help with

> this.)

> >

> > Beyond that, you could try making some local calls. Maybe you

can

> > make a friendly contact at a local hospital -- perhaps in its

> Social

> > Services area? -- who would have more suggestions for you. I

have

> > learned over the years that " contacts " are the name of the game

in

> a

> > patchwork health care system with no clear rules for moving

around

> > the game board, so to speak, and going directly to what you need

> > instead of pulling the " Do Not Pass Go " card over and over.

(I'll

> > skip the stories, but even with two kinds of insurance, I myself

> > have drawn that card too many times, especially when I needed an

> out-

> > of-state revision surgeon.)

> >

> > It is also extremely helpful to find a friend who will help you,

> > perhaps via private email, to get through the Social Security

maze

> > if that sounds like an option for you. From time to time we have

> had

> > SSA employees or their relatives participating in this group,

and

> > they have provided invaluable information to some of us,

> > usually " off the record. " You don't need to share any private

> > information with us, but I am still somewhat hopeful that

someone

> in

> > this group who knows more than I do may contact you either via

> posts

> > or email after reading about your plight online.

> >

> > Here's a slightly wild thought. I don't know where you live, but

> is

> > there any chance you might be moving to Massachusetts? That

state

> > seems to have some of the most liberal coverage options in the

> > country -- they are really in the vanguard, and I salute them.

> > Someone in Boston advised me years ago that if I wanted to have

> > surgery with Dr. Rand and get it reimbursed, I should move out

> there

> > and stay six months! And if I'm not mistaken, one or two people

in

> > this group have actually done so.

> >

> > Whatever you do, do not give up. Be stubborn, persistent, and

> > assertive! It is likely that you will need even more help with

> your

> > back as the years go on. We all need to face this squarely -- to

> > realize that scoliosis is a lifelong deal, and we need to work

the

> > system however possible (within the bounds of legality and

> morality,

> > of course -- no fraud, please, folks!) to ensure that we get the

> > care we will continue to need. Not even doctors and experts can

> tell

>

[Guest guest]

I'd like to hear from you how you did it!

:-)

I applied in Dec. online, they " lost " my paperwork, and made me

reapply in June. Supposedly I'll hear in October, but I'll bet I'll

be rejected.

Did you supply medical records, or just give them permission to

contact your doctors?

Did you have spinal fusions with hardware?

Thanks!

in Oakland

>- In

><mailto:%40>@\

groups.com,

> " rebeccamaas "

><rebeccamaas@...> wrote:

> >

> > Hi,

> > I've been on social security disability for over a year now and

> > would be happy to answer any questions people may have, if I can.

>I

> > am disabled due to multiple sclerosis, not scoliosis. However,

>the

> > application process is the same, as are many of the " do's &

>don'ts "

> > of filling it out.

> > I also read a website very thoroughly that had tips on filling out

> > the forms. I could post a link to it if you are interested. Some

> > of their tips were just common sense, other ones I ignored/didn't

> > use, but many of them were good ideas that helped me organize and

> > express my thoughts. I was approved on my first try, with no

> > lawyer - so I must have done something right!!

> >

[Guest guest]

There is a book that may be helpful to you on this subject. It is called "Nolo's Guide to Social Security Disability - Getting & Keeping Your Benefits," by A. Morton III, M.D.

I have been on disability for ten years now, and I am trying to come off of it, which the book talks about somewhat. The author says that age and education play a big role in how long it will take to get your benefits, if you are approved. People age 55 and older and those with less than a high school diploma are approved more quickly and with less hassle, he says. I guess that's why it took me 2-1/2 years and finally a lawyer to get my benefits. I was 35 at the time with a 4-year degree.

Another question, on another subject here: Is anyone else out there having major problems breathing? I sure am having trouble with it. I had a chest x-ray the other day as part of my yearly physical, and they had to do it twice, because my lungs were larger than the screen, they said. I have never been told that before. I am wondering if my lungs could be swollen.

I did a little research on swollen lungs, and I mostly came across information in regards to emphysema. I have never smoked, but I do seem to have some of the symptoms for emphysema. But I'm trying to stay calm about everything! I do have lots of stress in my life, which can add to breathing and all kinds of other problems, of course. I did not mention anything to my PCP about breathing problems, because I had mentioned the subject to my physical therapist recently, and she kind of treated me with disrespect a little bit about it, saying that I wasn't breathing right. But overall she was an excellent therapist, and that is partly why I am able to consider returning to work.

Wishing everyone here the best,

~Carolyn

[Guest guest]

Hi, first of all, I'd like to clarify again that I am on disability

because of multiple sclerosis, not because of my scoliosis. So I

don't have any SPECIFIC tips on applying in that regard.

That being said, some of the best advice I heard was to fill out the

forms as if it was your WORST day. (MS symptoms can vary widely day-

to-day, so for example just because you were able to walk well

yesterday doesn't mean you can walk well today)

Be honest, but be VERY descriptive. They are mind readers! Include

details on specifically what parts of your job you are unable to do,

and how your condition contributes to that. Include reasons why

this would apply to other jobs as well, because to get approved you

have to be unable to do ANY job, not just your current job. So for

example, I used to do vaccine research. I said that numbness &

tingling in my fingers didn't allow me to do the intricate

procedures like pipetting small amoutns DNA, loading gels, or

picking bacterial colonies. I also stated that back pain and muscle

spasticity made sitting, standing, or walking for any length of time

impossible, and I needed to be able to lay down every 3-4 hours to

rest (with or without sleeping). I specifically stated that with

fatigue I needed to nap about every 6 hours. When lab work became

too difficult, I started teaching college biology. So it showed

that I tried to change careers to accomodate my disability. I

stated that it was no longer feasible to teach because of the back

pain and fatigue (and specifically stated the earlier examples

again, it can't hurt to repeat things!!), and because of bladder

control issues I had to keep interrupting my lectures to run down

the hall and relieve myself (I was still able to walk with a cane

when I applied for disability). I also explained in detail how

bladder and bowel control affected my ability to be in front of a

classroom. I mentioned cognitive difficulties and short-term memory

problems from the MS made me a less competent teacher.

So be truthful, but describe exactly how you feel on your bad days.

Do NOT say something like this " Even though I can do >task< on a

good day, some days I hurt more and can't do it " Don't be afraid to

get a lawyer if you've been denied. From what I've heard, local law

offices that specialize in disability (vs ones that are general and

do everything) are usually better than the big national firms.

Oftentimes you're just a number to those big guys and everything is

impersonal.

As far as doctor reports go, I included the contact info for every

neurologist that I had ever seen for my MS. We have moved a lot, so

it was quite a few doctors. And I let social security request the

info because otherwise many places charge you for a copy of your

records. Since you are applying for scoliosis-related stuff, it may

be wise to obtain copies of your x-rays, MRIs, etc for them to

examine also. I don't think those items are usually requested by

social security, but they could give the disability examiner a good

visual your medical difficulties. Be sure to call EVERY SINGLE

doctor a couple of months after your application goes in, to check

that they have mailed your records to social security. It's YOUR

responsibility to make sure they do this, otherwise social security

will make their decision without seeing the records. Be sure to

inform your current doctor that you intend on applying, they may

write it in your records. Some docs may even include a few extra

notes in your records about why they support your decision. I can't

say for sure if this helps win your case, but I imagine it can't

hurt!

Here is the website I looked at. It took me several days to get

through all of the links. And like I said, some of the advice I

ignored, and some of it is just common sense. But it really helped

me focus in on important things to include, and clued me in on

things NOT to do. Like I said before, I applied based on disability

from MS, not from scoliosis-related problems. But I was approved on

the first try, with no lawyer. I filled out my forms online. You

can save and come back later, and it took me about 2 weeks to go

through and complete them.

http://www.disabilitysecrets.com/

I hope this is helpful!

> > >

> > > Hi,

> > > I've been on social security disability for over a year now and

> > > would be happy to answer any questions people may have, if I

can.

> >I

> > > am disabled due to multiple sclerosis, not scoliosis. However,

> >the

> > > application process is the same, as are many of the " do's &

> >don'ts "

> > > of filling it out.

> > > I also read a website very thoroughly that had tips on filling

out

> > > the forms. I could post a link to it if you are interested.

Some

> > > of their tips were just common sense, other ones I

ignored/didn't

> > > use, but many of them were good ideas that helped me organize

and

> > > express my thoughts. I was approved on my first try, with no

> > > lawyer - so I must have done something right!!

> > >

>

[Guest guest]

Hi ,

I have been working with my state rehab commission for several years now through the Ticket to Work program. I worked some in 2002 and 2003, but was not able to continue. I try not to focus on money, but it would be wonderful to get out of the poverty situation that the disability has put me into. I had planned on getting a whole lot more income when I applied for disability than what I am actually getting. I currently receive $629 a month. They give small cost-of-living increases each year. But the medical benefits are outstanding...at least in my case, they have been. But I know folks like our dear here would probaby beg to differ with me on that.

"Adult underachievement" is a term that I think applies to me, and I am trying to overcome that. The business (possibly a non-profit) I would love to start involves art and other creative ways of teaching children about good nutrition. Here in San , the obesity and diabetes rates are outrageous, and I would love to help children avoid a lot of health problems like I have had, many of which I attribute to bad nutrition all my life. I have lost about 45 pounds in the last few years, through dieting, and I am feeling much better. There are a few groups here in San that are working on these same types of projects regarding childhood nutrition, and I am looking into linking up with some of them. I have always wanted to write books, and I am thinking of writing children's books which would teach them about nutrition in fun, eye-catching ways. There seems to be a great need for these kinds of things, at least here in my neck of the woods.

I came across a website yesterday about a place in Great Britain where the local government got together a team of folks to create a funny-looking cartoon character, and then they had an art contest to get the kids to name him. I am thinking of trying to do something similar here where I live. I am also thinking of using puppets, and I thought it would be neat to find a cute puppet (there are some adorable ones out there!), and then come up with a drawing of that same character to use in coloring books, etc. and to allow the children to give it a name through a contest.

Good luck to you. I have a garden variety of health problems which are involved with my disability. I have post-traumatic stress disorder from domestic violence as a child and with my former husband. I understand that people who have a combination of physical and emotional disorders are more likely to get disability. Even so, it still took me 2-1/2 years to get it, plus a lawyer, as I said.

Good luck!

~Carolyn

In a message dated 8/20/06 9:46:41 P.M. Central Daylight Time, rebeccamaas@... writes:

Carolyn,Congrats on your decision to go back to work! Are you planning to use the "ticket to work" program from social security? I would love to eventually go back to work too. Staying at home 24/7 is really hard to deal with, especially since I used to be quite active. What kind of work are you thinking of doing? I used to do lab work - vaccine research & development. I also taught college biology part time.My advice about the lungs is to be sure you get it checked out further, and that you feel comfortable with the person you see. Your physical therapist shouldn't have treated you with disrespect when you voiced your concerns!

[Guest guest]

That was supposed to read " They are NOT mind readers! " Oops...

> Be honest, but be VERY descriptive. They are mind readers! Include

> details on specifically what parts of your job you are unable to do,

> and how your condition contributes to that. Include reasons why

[Guest guest]

Carolyn,

Congrats on your decision to go back to work! Are you planning to

use the " ticket to work " program from social security? I would love

to eventually go back to work too. Staying at home 24/7 is really

hard to deal with, especially since I used to be quite active. What

kind of work are you thinking of doing? I used to do lab work -

vaccine research & development. I also taught college biology part

time.

My advice about the lungs is to be sure you get it checked out

further, and that you feel comfortable with the person you see.

Your physical therapist shouldn't have treated you with disrespect

when you voiced your concerns!

>

> There is a book that may be helpful to you on this subject. It is

called

> " Nolo's Guide to Social Security Disability - Getting & Keeping

Your Benefits, "

> by A. Morton III, M.D.

>

> I have been on disability for ten years now, and I am trying to

come off of

> it, which the book talks about somewhat. The author says that age

and

> education play a big role in how long it will take to get your

benefits, if you are

> approved. People age 55 and older and those with less than a high

school

> diploma are approved more quickly and with less hassle, he says.

I guess that's

> why it took me 2-1/2 years and finally a lawyer to get my

benefits. I was 35 at

> the time with a 4-year degree.

>

> Another question, on another subject here: Is anyone else out

there having

> major problems breathing? I sure am having trouble with it. I had

a chest

> x-ray the other day as part of my yearly physical, and they had to

do it twice,

> because my lungs were larger than the screen, they said. I have

never been told

> that before. I am wondering if my lungs could be swollen.

>

> I did a little research on swollen lungs, and I mostly came

across

> information in regards to emphysema. I have never smoked, but I do

seem to have some

> of the symptoms for emphysema. But I'm trying to stay calm about

everything! I

> do have lots of stress in my life, which can add to breathing and

all kinds

> of other problems, of course. I did not mention anything to my

PCP about

> breathing problems, because I had mentioned the subject to my

physical therapist

> recently, and she kind of treated me with disrespect a little bit

about it,

> saying that I wasn't breathing right. But overall she was an

excellent

> therapist, and that is partly why I am able to consider returning

to work.

>

> Wishing everyone here the best,

> ~Carolyn

>

[Guest guest]

,

Thanks for all the kind words of encourgement! One of the main school districts in San has their office just around the corner from me, so I think I will talk to them about all of my ideas.

The Ticket to Work program can be a little confusing. But that book I mentioned last time, "Nolo's Guide to Social Security Disability," by Dr. Morton explained a whole lot of things about coming off disability that no one had ever been able to tell me about before. For example, I didn't know that Medicare is continued for people on Social Security disability for 8-1/2 years after the cash benefits stop. That was very comforting news to me. And Social Security has a trial work period, where you can work without losing any of the cash benefits. And you can make up $800 a month without the cash benefits ever being affected.(I think that's what it is right now...it is in the book, but I am trying to hurry off to go help my daughter address wedding invitations!)

My worker at the Texas Rehab Commission (now called DARS) got a little ansy when I had to quit working. But they have learned to keep in pretty close contact with my doctors, and let my doctors basically decide when I can and can't work. And the team of doctors I have now are pretty negotiable with me on all of this stuff. It has taken a lot of trial and error and some serious praying to find some good doctors!

The way the Ticket to Work program works, at least here in Texas, is that they issue it to you, and then there are a number of agencies you can choose to work with. I chose my state rehab office because that seemed like the best choice for me. But they do not tell you at all which employers you can and can't apply with. There is total freedom in that area. They have no contact with the employers or potential employers. They just help with things like a little extra money for expenses during the job-hunting process. Like right now, I am receiving a $25/week stipend for whatever I want or need to use it for. And I don't have to show them receipts or anything. And they loaned me a fax machine, etc.

The only thing is, my case worker at Texas Rehab is supposedly paid some kind of bonus, I heard through the grapevine, when she sends folks back to work. And I think she receives some kind of sliding-scale percentage, because she seems to be pushing me to the higher-paying jobs. And she told me that they don't work with people who's only goal is to start a business. But a man from the Ticket to Work program called me to follow up with my case, and after I explained things to him, he suggested that I contact Advocacy, Inc. in Austin, Texas. That resource is listed in the back of the book I mentioned above as a state advocacy and protection organization for the state of Texas. Each state has their own. I haven't contacted them yet, but I plan to, probably today.

Anyone, gotta run get those wedding invitations addressed!

Take care!

~Carolyn

In a message dated 8/21/06 8:00:27 A.M. Central Daylight Time, rebeccamaas@... writes:

Carolyn,Your work goals sound fantastic! I think your ideas of working with kids on their nutritional habits sounds wonderful. And I think that the character-naming contest sounds great too - a great way to get the kids involved! When my city got a minor-league hockey team they had a contest to name the team. It was great publicity, and it really helped build a fan base before the team even arrived! It would be exciting if you could get a local school involved with the whole process!If I may ask, how do feel about the ticket to work program? How understanding were they when you stopped working and how did working affect your disability pay? Did you have to work for a company that works with the ticket to work program, or can you work for anyone?

[Guest guest]

Carolyn,

Your work goals sound fantastic! I think your ideas of working with

kids on their nutritional habits sounds wonderful. And I think that

the character-naming contest sounds great too - a great way to get

the kids involved! When my city got a minor-league hockey team they

had a contest to name the team. It was great publicity, and it

really helped build a fan base before the team even arrived! It

would be exciting if you could get a local school involved with the

whole process!

If I may ask, how do feel about the ticket to work program? How

understanding were they when you stopped working and how did working

affect your disability pay? Did you have to work for a company that

works with the ticket to work program, or can you work for anyone?

>

>

> Hi ,

>

> I have been working with my state rehab commission for several

years now

> through the Ticket to Work program. I worked some in 2002 and

2003, but was not

> able to continue. I try not to focus on money, but it would be

wonderful to

> get out of the poverty situation that the disability has put me

into. I had

> planned on getting a whole lot more income when I applied for

disability than

> what I am actually getting. I currently receive $629 a month.

They give small

> cost-of-living increases each year. But the medical benefits are

> outstanding...at least in my case, they have been. But I know

folks like our dear

> here would probaby beg to differ with me on that.

>

> " Adult underachievement " is a term that I think applies to me, and

I am

> trying to overcome that. The business (possibly a non-profit) I

would love to

> start involves art and other creative ways of teaching children

about good

> nutrition. Here in San , the obesity and diabetes rates

are outrageous,

> and I would love to help children avoid a lot of health problems

like I have

> had, many of which I attribute to bad nutrition all my life. I

have lost about

> 45 pounds in the last few years, through dieting, and I am

feeling much

> better. There are a few groups here in San that are

working on these same

> types of projects regarding childhood nutrition, and I am looking

into

> linking up with some of them. I have always wanted to write books,

and I am

> thinking of writing children's books which would teach them about

nutrition in fun,

> eye-catching ways. There seems to be a great need for these kinds

of things,

> at least here in my neck of the woods.

>

> I came across a website yesterday about a place in Great Britain

where the

> local government got together a team of folks to create a funny-

looking cartoon

> character, and then they had an art contest to get the kids to

name him. I

> am thinking of trying to do something similar here where I live.

I am also

> thinking of using puppets, and I thought it would be neat to find

a cute puppet

> (there are some adorable ones out there!), and then come up with

a drawing of

> that same character to use in coloring books, etc. and to allow

the children

> to give it a name through a contest.

>

> Good luck to you. I have a garden variety of health problems which

are

> involved with my disability. I have post-traumatic stress disorder

from domestic

> violence as a child and with my former husband. I understand that

people who

> have a combination of physical and emotional disorders are more

likely to get

> disability. Even so, it still took me 2-1/2 years to get it, plus

a lawyer,

> as I said.

>

> Good luck!

>

> ~Carolyn

>

>

>

>

>

> In a message dated 8/20/06 9:46:41 P.M. Central Daylight Time,

> rebeccamaas@... writes:

>

>

>

>

> Carolyn,

> Congrats on your decision to go back to work! Are you planning to

> use the " ticket to work " program from social security? I would

love

> to eventually go back to work too. Staying at home 24/7 is really

> hard to deal with, especially since I used to be quite active.

What

> kind of work are you thinking of doing? I used to do lab work -

> vaccine research & development. I also taught college biology

part

> time.

> My advice about the lungs is to be sure you get it checked out

> further, and that you feel comfortable with the person you see.

> Your physical therapist shouldn't have treated you with

disrespect

> when you voiced your concerns!

>

>

[Guest guest]

Carolyn,

Thanks for your tips and for sharing your personal experiences on

going back to work. Please keep us updated on your progress. I

will definately be buying the Nolo's book! And good luck with all

of your daughter's wedding plans. What an exciting time in your

family's lives!

>

>

> ,

>

> Thanks for all the kind words of encourgement! One of the main

school

> districts in San has their office just around the corner

from me, so I

> think I will talk to them about all of my ideas.

>

> The Ticket to Work program can be a little confusing. But that

book I

> mentioned last time, " Nolo's Guide to Social Security Disability, "

by Dr. Morton

> explained a whole lot of things about coming off disability that

no one had ever

> been able to tell me about before. For example, I didn't know

that Medicare

> is continued for people on Social Security disability for 8-1/2

years after

> the cash benefits stop. That was very comforting news to me. And

Social

> Security has a trial work period, where you can work without

losing any of the cash

> benefits. And you can make up $800 a month without the cash

benefits ever

> being affected.(I think that's what it is right now...it is in

the book, but I

> am trying to hurry off to go help my daughter address wedding

invitations!)

>

> My worker at the Texas Rehab Commission (now called DARS) got a

little ansy

> when I had to quit working. But they have learned to keep in

pretty close

> contact with my doctors, and let my doctors basically decide when

I can and

> can't work. And the team of doctors I have now are pretty

negotiable with me on

> all of this stuff. It has taken a lot of trial and error and some

serious

> praying to find some good doctors!

>

> The way the Ticket to Work program works, at least here in Texas,

is that

> they issue it to you, and then there are a number of agencies you

can choose to

> work with. I chose my state rehab office because that seemed like

the best

> choice for me. But they do not tell you at all which employers you

can and

> can't apply with. There is total freedom in that area. They have

no contact with

> the employers or potential employers. They just help with things

like a

> little extra money for expenses during the job-hunting process.

Like right now, I

> am receiving a $25/week stipend for whatever I want or need to

use it for.

> And I don't have to show them receipts or anything. And they

loaned me a fax

> machine, etc.

>

> The only thing is, my case worker at Texas Rehab is supposedly

paid some

> kind of bonus, I heard through the grapevine, when she sends folks

back to work.

> And I think she receives some kind of sliding-scale percentage,

because she

> seems to be pushing me to the higher-paying jobs. And she told me

that they

> don't work with people who's only goal is to start a business. But

a man from

> the Ticket to Work program called me to follow up with my case,

and after I

> explained things to him, he suggested that I contact Advocacy,

Inc. in Austin,

> Texas. That resource is listed in the back of the book I mentioned

above as

> a state advocacy and protection organization for the state of

Texas. Each

> state has their own. I haven't contacted them yet, but I plan to,

probably today.

>

> Anyone, gotta run get those wedding invitations addressed!

>

> Take care!

> ~Carolyn

>

>

>

>

> In a message dated 8/21/06 8:00:27 A.M. Central Daylight Time,

> rebeccamaas@... writes:

>

> Carolyn,

> Your work goals sound fantastic! I think your ideas of working

with

> kids on their nutritional habits sounds wonderful. And I think

that

> the character-naming contest sounds great too - a great way to

get

> the kids involved! When my city got a minor-league hockey team

they

> had a contest to name the team. It was great publicity, and it

> really helped build a fan base before the team even arrived! It

> would be exciting if you could get a local school involved with

the

> whole process!

> If I may ask, how do feel about the ticket to work program? How

> understanding were they when you stopped working and how did

working

> affect your disability pay? Did you have to work for a company

that

> works with the ticket to work program, or can you work for

anyone?

>

>

[Guest guest]

I would very much like the website you visited. I am in the

process or scheduling a revision surgery and my doctor has advised

that he won't allow me to work for 6 months after the first surgery

and then he wants to do another and again I won't work for 6 months.

I am almost unable to work as it is and have been thinking I may

have to apply for disability.-

-- In , " rebeccamaas "

<rebeccamaas@...> wrote:

> I also read a website very thoroughly that had tips on filling out

> the forms. I could post a link to it if you are interested.

[Guest guest]

,

Thank you SO much for the vote of confidence! The reason I mentioned the term "adult underachiever" is because I don't have too much problem with the planning and researching of ideas...it's the part of actually putting them into practice that always somehow causes problems for me. Low self-esteem is one of those things I struggle with, and it sometimes interferes with my ability to go out there and put all my plans into action.

I went to see a movie last weekend with my kids who are both college students. (The first one I have seen in years)! It was called "Accepted." I don't know if anyone here has seen it, but I kind of liked that movie. It reminded me of my own life and how I have been on both sides of the academic world...both the creative side and the academic side. I don't want to give away the movie plot, but if you have seen it, you will probably understand what I am talking about here.

The Ticket to Work program isn't too bad, but I am currently trying to get in touch with Advocacy, Inc. It is the legal advocacy program here in Texas for the disabled. There are similar organizations for the disabled for each of the 50 states (each has their own), which are listed in the back of that Nolo book I mentioned. From what I have been hearing, Advocacy may be able to help me more than the Ticket to Work program has, so we shall see. I was kind of hesitant to call them, I guess because of my shyness or low self-esteem or whatever, but I finally called them today and left a message. I'll keep you posted on that. I would much rather sit and do research and make plans in my head and on paper than to actually talk to people. A bit of social anxiety I suppose, is another way of putting it.

I like your ideas about writing! I was trying to write for a while. But I kept running into snags with it, like publishers wanting to see my other published work before they would consider me. Like someone once said, writing can be a lonely pursuit, but I know there are all kinds of writer's guilds and things like that out there, which I am planning to look into for myself.

Thanks again, and good luck!

~Carolyn

In a message dated 8/23/06 2:16:50 P.M. Central Daylight Time, feistyfounder@... writes:

Come on, now, folks, we have GOT to stop putting ourselves down here! "Adult Underachiever"? I don't think so! Just look at all your phenomenal plans, the alliances you have looked into forming, the program you would like to start for kids, the writing you want to do . . . I think the planning, the laying of groundwork, is probably the most crucial aspect of launching a new project. Your plans are terrific, and having conceptualized them as clearly, after as much obvious thought as you have given them, you are really halfway there. I admire you tremendously for this.I want to explain that I may not have expressed myself too clearly on government-sponsored health care. Medicare is my own secondary payer, and I am very glad to have it and certainly do not mind the premiums. The trouble I have had is strictly with my primary payer, a group HMO under which I have coverage through my former spouse's employment. I rely on ths plan very heavily, especially for prescription drugs, and Medicare picks up where it leaves off -- otherwise, I hate to think what I might have had to pay for all that surgery and hospitalization over the years. I do not know which plan you specifically have, but I have also heard from some disabled friends that Medicaid is a total lifesaver for them. My problem is not with these programs, but with the fact that they do not cover EVERYONE! What I mean to say is that I have always felt strongly that we need a national/universal health program here in the U.S., with the federal government playing a major role. I suppose the private payers would also have to be involved, given their prominent rolein the whole health care scene -- Lord knows I would hate to see a group of skilled insurance professionals thrown out of their jobs -- but it seems to me that if we made another serious and rational effort to bring about equitable health care, it could be done without too much trauma or inconvenience to any of the major players or affected parties. And I don't quite understand why we are not all demanding this NOW. It is true that we have terrific health care compared to many parts of the developing world, for instance -- but compared to, say, most or all of industrialized western Europe, not to mention the U.K. and Canada, we are back in the Dark Ages. 45 MILLION AMERICANS UNINSURED?? MILLIONS OF CHILDREN WITH NO HEALTH COVERAGE? Why is this not seen as a massive scandal and an acute and terrifying emergency? Oh dear, I finally got galvanized to jump up on my soapbox and trumpet my baldfaced sentiments at everyone in sight. (Mail, I get mail . . .I can already see the irate posts and emails rolling in . . . )So enough of my ranting, but I hope you may now understand that I do not disagree with you in the least about government health benefits.Before I sign off, I just wanted to say that I was so interested and intrigued to hear that you are involved with Ticket to Work. I got my own "Ticket" several years ago but have not been well or mobile enough to act on this in any way. I am particularly impressed that you seem to find this program compatible with your plans for possible self-employment, free-lance writing, etc. When you have a chance, I hope you will tell us more . . . I personally find the incentives to work that Social Security provides impressive. If I'm not mistaken, the monthly max you can earn is somewhere around $1,000 now? At least it is for people on SSD. But I am not clear on how this would work if one were free-lancing and earning a less regular income -- time to trot back to ssa.gov, I guess. I am still working on my book and getting closer to querying a publisher or two, as well as looking into free-lance markets for shorter pieces. I trust that SSA has some precedent for dealing with disabled free-lancers. I also hope to find out how their exempting the cost of any special equipment necessary to your work would apply (or not apply) to people with disabiities like mine who may never be able to resume working outside the home, e.g., commuting to an office. I expect to be working, i.e., writing, from home for the remainder of my life. I think I have finally begun reconciling myself to this new reality (and it has only taken about 8 years!). Now I need to consider all the practical aspects of recharging my career part time while based at a laptop in my recliner . . . Best,

[Guest guest]

Come on, now, folks, we have GOT to stop putting ourselves down

here! " Adult Underachiever " ? I don't think so! Just look at all your

phenomenal plans, the alliances you have looked into forming, the

program you would like to start for kids, the writing you want to

do . . . I think the planning, the laying of groundwork, is probably

the most crucial aspect of launching a new project. Your plans are

terrific, and having conceptualized them as clearly, after as much

obvious thought as you have given them, you are really halfway there.

I admire you tremendously for this.

I want to explain that I may not have expressed myself too clearly on

government-sponsored health care. Medicare is my own secondary payer,

and I am very glad to have it and certainly do not mind the premiums.

The trouble I have had is strictly with my primary payer, a group HMO

under which I have coverage through my former spouse's employment. I

rely on ths plan very heavily, especially for prescription drugs, and

Medicare picks up where it leaves off -- otherwise, I hate to think

what I might have had to pay for all that surgery and hospitalization

over the years. I do not know which plan you specifically have, but I

have also heard from some disabled friends that Medicaid is a total

lifesaver for them.

My problem is not with these programs, but with the fact that they do

not cover EVERYONE! What I mean to say is that I have always felt

strongly that we need a national/universal health program here in the

U.S., with the federal government playing a major role. I suppose the

private payers would also have to be involved, given their prominent

rolein the whole health care scene -- Lord knows I would hate to see a

group of skilled insurance professionals thrown out of their jobs --

but it seems to me that if we made another serious and rational effort

to bring about equitable health care, it could be done without too

much trauma or inconvenience to any of the major players or affected

parties. And I don't quite understand why we are not all demanding

this NOW. It is true that we have terrific health care compared to

many parts of the developing world, for instance -- but compared to,

say, most or all of industrialized western Europe, not to mention the

U.K. and Canada, we are back in the Dark Ages. 45 MILLION AMERICANS

UNINSURED?? MILLIONS OF CHILDREN WITH NO HEALTH COVERAGE? Why is this

not seen as a massive scandal and an acute and terrifying emergency?

Oh dear, I finally got galvanized to jump up on my soapbox and trumpet

my baldfaced sentiments at everyone in sight. (Mail, I get mail . . .I

can already see the irate posts and emails rolling in . . . )

So enough of my ranting, but I hope you may now understand that I do

not disagree with you in the least about government health benefits.

Before I sign off, I just wanted to say that I was so interested and

intrigued to hear that you are involved with Ticket to Work. I got my

own " Ticket " several years ago but have not been well or mobile enough

to act on this in any way. I am particularly impressed that you seem

to find this program compatible with your plans for possible self-

employment, free-lance writing, etc. When you have a chance, I hope

you will tell us more . . .

I personally find the incentives to work that Social Security provides

impressive. If I'm not mistaken, the monthly max you can earn is

somewhere around $1,000 now? At least it is for people on SSD. But I

am not clear on how this would work if one were free-lancing and

earning a less regular income -- time to trot back to ssa.gov, I

guess. I am still working on my book and getting closer to querying a

publisher or two, as well as looking into free-lance markets for

shorter pieces. I trust that SSA has some precedent for dealing with

disabled free-lancers. I also hope to find out how their exempting the

cost of any special equipment necessary to your work would apply (or

not apply) to people with disabiities like mine who may never be able

to resume working outside the home, e.g., commuting to an office. I

expect to be working, i.e., writing, from home for the remainder of my

life. I think I have finally begun reconciling myself to this new

reality (and it has only taken about 8 years!). Now I need to consider

all the practical aspects of recharging my career part time while

based at a laptop in my recliner . . .

Best,

>

>

They give small

> cost-of-living increases each year. But the medical benefits are

> outstanding...at least in my case, they have been. But I know folks

like our dear

> here would probaby beg to differ with me on that.

>

>