I am feeling overwhelmed by one particular aspect of my life, an issue that contributed greatly to the marriage-busting stress I've been going through..I have had medical insurance under my husband's job since I was diagnosed - indeed that's why we married initially. He has been out of work for a year and a half and is finding it difficult to find another job for various reasons and our insurance which was extended under Cobra will expire in October...

I have been trying to look into what the alternatives might be - I work only very part-time, very-well paid for what I do, but it's been about the fullest commitment I have been able to manage in recent years because of the on-off fluctuations and unpredictable dystonia. Even though I have been improving and feeling much better with certain changes in my meds regimen, I am not sure I could handle more of a time commitment at my job right now.

Given the way things are going, with deductibles and co-pays ever-rising, pre-existing conditions ever more scrutinized, and more prescription costs being shifted to the patient, I think I am probably basically uninsurable in this country, even if I remarry at this point (boyfriend is working but uninsured at this point also). But does anyone know of a good source of up-to-date info about medical insurance and my options? I feel as though I should be able to find it myself, but I feel exhausted and overwhelmed when I try. The Actors Fund of New York was very helpful when I found out about disability options (basically none unless I totally retiire from work, which I don't want to do because I love my job, and wanted to keep contributing to society in some way - and didn't want to lie about being completely disabled - have also been caring part-time for both my aged parents who have been in and out of the hospital over the past year or so -mom is wheelchair bound), so perhaps the Actors Fund can help me again on this issue. But I wanted to ask if any of you USA people know of a good clearinghouse of up-to-the-minute info and advice on this. All the Parkinson's organizations that I called seemed woefully unable to offer solid advice or direct me, including the social worker for my neurologist...

I was born in England, so could get a British passport in theory, and may have to consider relocating....I just don't want to leave it to the last second in October to figure out what I have to or can do...Any ideas about who to consult for advice would be appreciated.
thank you all.

First, are you Social Security Disabled? Any of these should be able to guide you with regard to health insurance.

COBRA is a complex entity. I don't know if this will help, but here it is anyway...

COBRA coverage and Disability
http://cobrainsurance.com/help/quest...and+Disability

The HIPPA law states that all qualified beneficiaries, not just the disabled person, have the right to continue with COBRA coverage and take advantage of the 11 month extension. In compliance with the COBRA law, it is possible to extend the 18 months of coverage to a 29 months, if and individual has been determined disabled at the time of a qualifying event. HIPPA has modified the plan by allowing the 11 month extension to consist of those disabilities that may happen before or during that first 60 days of your COBRA coverage. You will need to contact the plan administrator before the end of the 18 month period. You must also notify the administrator no later than 30 days after the individual is no longer qualified as disabled by the law.


Also Medicaid in New York State+


Also NYS Office of the Aging which service not just the 65 and older, the also the Social Security Disabled


Also New York Department of the Aging


Hope this is of some help.

Good luck!!

Hi Carolyn - thanks - my understanding of Social Security disabled means completely disabled, can't do a thing, which is not true. So it would mean quitting the job I do have - and which I love - and never returning to it (I teach dance at the top private high school in the country). It seems a lot to sacrifice to then become indolent and dishonest.....so I struggle with that. But perhaps I have to rethink everything.

Whoops, just wanted to clarify - by indolent, I mean for me, since I still can function at a high level some of the time, but extremely compromised by on-offs....don't mean to say disabled folks are indolent at all!!!!!

Fiona=
Here is a handy link http://disabilityblogger.blogspot.co...-decision.html

As for insurance = forget it. Unless you can get into a good academic or corporate setting it ain't gonna' happen. Americans have been sold such a bill of goods. Some still think there's a safety net.

For me, keeping my head above water finacially has been a bigger challenge that pd itself..As you know I still fish part time, but I dont make much money at it at all..I am on SSDI, and Medicare, and although I cant live without it..it is a double edged sword, and here is how it applies to my situation...

I am in a disability situation because I cant work a 40 hour job..Even though I still fish, which is rough work..I am able to do it beacuse I can do it in my own time frame, when physical conditions warrent it, and I can do what I feel up to doing, come and go as I need to..If I dont feel up up it, I dont have to go..I am not mandated to produce "x" amount of product, and that is the only way I can work, mostly due to pd related cronic fatigue..So I cant work at a full time job for the sole purpose of reaping the benefits they have to offer, like health care, and many jobs dont offer complete paid health care anymore anyway..I havent got the stamina to support myself with a full time job, I dont make enough on SSDI, and even if you can make alot of money working part time, you are penalized by SSDI, and considered inelligable to collect benefits..Damned if I do, and damned if I dont

From how you describe your situation Fiona..You would probably not be able to collect SSDI if you make too much money part time, and if you decided to comply with the criteria to become eligable for SSDI, you would probably have to either work less to make less, or do what you are doing now for less money, and when I say less money, what SSDI would allow you to make part time would no doubt be an insult to a professional like yourself..Thats the double edged sword I am talking about in order to qualify to collect that SSDI check, and the Medicare coverage..Medicare by the way, is a 24 month waiting period, after you are approved for SSDI, which would not help you in the here and now anyway, even if you decided to apply for SSDI

So I work part time, and Im allowed to make about $670 a month without getting into the trial work period, which means if I stay below that amount, Social Security will most likely stay off of my back..But I dont make that much per month when I do fish, and I dont make a pay every month..I make a pay maybe 5 months out of the year..My SSDI check barely gets me through each month..Long story short..I am at the mercy of the system..So what I got into a few months ago, is the stock market, and I did it because you are allowed to make all the profit your little heart desires without being penalized by Social Security..I sell covered calls on stocks which is the most consevative kind of stock trading..There are a number of techniques you can use when the price of the stocks you own goes down, and still sell calls against them to generate income on the position..But it of course isnt without risk, tons of research, math, making the most profitable move at the opportune time, and a little bit of luck..I have been ahead of the game selling calls so far, and compounding the profit..What it comes down to, is you do what you have to do to survive..I lived on the edge fishing most of my life never thinking about what would happen if I were to become disabled..No benefits, no 401K, no IRA, no retirement plan, no severance pay, no disability insurance

This is the corner I got backed into when I became disabled

all of you, thanks so much for input.

Steve, yes, your explanation of your own circumstances is very helpful in its clarity alone...

My situation is that I work VERY part-time also - but I get paid a lot for that amount of time, but it adds up to only a few hundred dollars a month...The way I have been able to work out my job currently is by the skin of my teeth, because most of the time it is very minimal time that I teach (two classes a week for most of the year.) I have other skills, and perhaps the school, who loves me, would be willing to hire me part-time to do some kind of administration enuf to qualify for their insurance plan. My fear is that with this pre-existing condition, that I wouldn't be coverable at all.

But Steve, what I understand about disability is that you have to be totally disabled for some time period before you can then add back a liitle income, up to $900 or so a month...But the thing is because I teach something as athletic as dance, I wonder if they will keep believing me about being disabled the rest of the time and how to explain that the on and off periods are totally unpredictable and wipe me out frequently....that has been the case anyway until recently, now changing quite a bit with considerable improvement with the use of mucuna and some other destressing and dietary adjustments...but we'll see.

Also my job is not possible to be kept under the table because part of its value to my employer is to be able to list me as faculty publicly....

So Rick, I read your previous post about mobile home sales - a unique idea - and Steve your stock business as well....I recently read a book about starting a home business on the internet that was quite galvanizing - maybe I could try that while we still have any kind of viable economy at all....

But the idea of being totally uninsurable to me is pretty daunting. I'm sure my story is one of many, many more to come.... So I hope my path can help some others, too....

dear one,


the research has dead ends...
if you are disabled in the USA - and you have not the quarters for SSA

your only choice is to be poor, I have been thankfully at least been given MEDICAID
your family can help you - but you must stay poor on paper...

love,

Making $900 per month on SSDI is where you can get into a jam..Anything above..(not sure of the actual figure for 2008)..$670 per month will put you in the trial work period..You would have to research this, because after "I think" the first trial work period year, you are allowed to make up to the $900, or whatever the actual figure is for nine months out of the year, and the months dont have to be consecutive..If you claim over $670 in the 10th month they boot you off SSDI..You have to be careful of the amount of hours you claim too..Too many hours per week will cause suspicion..I wouldnt worry too much about the fact that you are a dance teacher, cuz I am a fisherman, and they havent questioned that in the 3 years Ive been on SSDI..I claim 10 hours per week @ $15.00 per hour, and that brings me up too $600 pe month, which is below the $670 or whatever they allow me without getting into the trial work period situation..The trail work period may not be as fearful as I make it out to be, but I fear putting myself in a situation where Im feel like Im under the microscope..But anyway..Do the research, and dont take my word verbatum, because I may be wrong about somethings..I think Im in the ballpark though

Hello, where I work, one gets full benefits if one works 20 hours per week. Perhaps you can find a position that will give you and your husband health benefits for part time work. I hope so!

oops...posted incorrectly.

sorry for the intrusion