What do I do now?

[mattcope]

When I was diagnosed twelve years ago my life fell apart.  I sunk into a deep suicidal depression and honestly have not fully recovered.  I burned a lot of bridges,  moved across country, and just started to exist and ended up on disability.   About six years ago I got a job, but had to quit it because, although I felt well enough to work, the cost of medications were quickly unbearable and resumed disability.   Now I have moved again to another state, and that state  (North Carolina) is trying to get me off of disability, but the medications  are still so expensive, and with no real skills, I am looking at minimum wage hell  where I will not be able to afford all my different medications (and yes I am on heavy psych medications  as well) nor the doctors bills that go along with it.   I already live in the cheapest place I could find, and I do not have the means to afford even moderate luxuries, how in the hell am I going to re enter the workplace and not end up homeless and have my health deteriorate.  It is bad enough that this is the third year without a cost of living increase.  EVERYTHING has gotten more expensive, but my income flatlined.   I am making less than 10 grand a year on disability, but last year med cost alone was over 75 thousand (at least by the medicare statement) and the covered doctors costs were over 50 grand.  I want to work, but honestly what do I do now?  I don't have the skills to make over 135 grand a year, and I have been MIA from the work force for years and will have to explain that....  I am so totally screwed.

[BT65]

I guess I don't know exactly what you mean by saying NC wants to get you back to work.  They can't force someone.  You're on disability according to Social Security's rules, not any state's.  You do not have to do the ticket to work program, and as long as you still meet Social Security's definition of having a disability, you don't have to worry. 

[mattcope]

I already passed the ticket to work program qualifications when I had the job years ago...   but now thier doctors are saying there is nothing keeping me from working.   I told them my problem with it, MY doctors support it, but their doctor is saying it is not enough.

[mecch]

What a predicament.
I am way out of the loop for any advice or experience.

I was just struck by the medical costs you listed.  How does an HIV+ person cost over 4 grand a month in doctor bills, year after year, and more than 6000 a month on medicine?  Does the medicare get billed a much higher rate than the market cost? 

Courage! 

Maybe when and if the Obama administration gets health care fully online at reasonable costs for the pooled coverage, it would be a better time to go back to work at a very low salary, than now. 

[Theyer]

I am sorry I can offer no help ,but what dear bt said I would hang on to I would also try to see if I could get any more help from resourses working with people in your situation, good luck with it all and please keep posting as it might give some support,
Take care
Theyer

[Joe K]

I'm sorry to hear you are having problems, but I am confused on which doctor is telling you can return to work.  Do they work for Social Security?  If so, you should have received a notice of redetermination from SS, which means they are re-evaluating your ability to work.  It would also be helpful to know why you receive SS benefits.  I am on disability for mental illness and while there have been times when physically I may have been able to work, my mental state makes that impossible.  Also, do you receive any state assistance, such as Medicaid?  In that case the state may be taking another look at you, but it's hard to know what is happening without some more details.

[Jeff G]

The ticket to work program is a back to work program in the way its designed . You have to be very careful how much you make each month and how many hours you are working . Sometime the program can require you to see a doctor to reevaluate your condition and disability . The ticket to work programs goal is to get you back to work full time or off the disabled roll and not designed for those of us with chronic disabling conditions who just want to earn extra while disabled . You can use it for that purpose if you are careful but there are pitfalls .   

I know some people want or must earn extra money to make ends meet but I would weigh your options carefully if you are disabled and want to work this program . 

[BT65]

I already passed the ticket to work program qualifications when I had the job years ago...   but now thier doctors are saying there is nothing keeping me from working.   I told them my problem with it, MY doctors support it, but their doctor is saying it is not enough.

Who are "their" doctors?  Social Security's?  I'm a bit confused.  Are you doing a re-determination? 

[mewithu]

 You need a letter from your DR and follow the excample they have in the SSD section on reavaluating. Your Dr has to let them know why he thinks youu can't work. Sometimes Dr's do not want to fill out enough of a letter to evaluate your present condition. There is a company that charges 300 dollars to do a recertification for you it is called  QICKAID youll have to google that to get their phone number in your area.
 Hope you saved all your records when you were sick and now if your unable to work. It want take long to go down to 200 CD4 T-cells if your not taking meds either.Good luck everyone.

[BJS2011]

What a predicament.
I am way out of the loop for any advice or experience.

I was just struck by the medical costs you listed.  How does an HIV+ person cost over 4 grand a month in doctor bills, year after year, and more than 6000 a month on medicine?  Does the medicare get billed a much higher rate than the market cost? 

Courage! 

Maybe when and if the Obama administration gets health care fully online at reasonable costs for the pooled coverage, it would be a better time to go back to work at a very low salary, than now. 

I really think that those costs are an exaggeration. I am on HIV meds plus 7 other meds and my total cost is 1600 a month. I just can't see a 6000 a month bill.

[MAKD]

Hey MATTCOPE
That you are reaching out to share your experience is great, it shows courage when many others are sitting in silence with the same fears and question but are unable to share for whatever reasons they have.  I have heard of what you are talking about from the costs to the hassle to go back to work.  I am glad to see many supportive responses to your question and just like the different responses; we are all having our own experiences with living with HIV.  I have heard from others that when they did try to go back to work that social security questioned their need for support when they needed to resume their benefits and not try to pursue a job.  Like others have written social security is Federal but the ARV drug plans are often state managed; and just to add to the confusion the meds for side effects are sometimes covered by Medicaid that a person qualifies for on social security.  It can be helpful to put your pills in front of you and sort who covers what; similarly then take some of the questions you have and write down who covers what.  When you have the basics on paper and have taken some of the mystery out of it you can ask more specific questions with clarity, like: “why when my Dr says I probably would not be successful in the work force is their some other Dr saying I need to get a job?”   When you have clarity it can reduce the fear of “what if”.  From there you can maybe get to the place of what do I have to do today?  What must I take care of?  what can I do? What do I want my life to be like?  What resources are out there to help me with the previous questions?
HIV is an episodic illness so sometimes you feel great and then for no apparent reason sometimes we feel rotten, and it is not easy to predict when the good days will be.  The meds are great, no question about it, but not everyone is on the same pills (so some cost $1600/month and some people’s meds cost many thousands of dollars/month) and some people have side effects while others seem to go through life unaffected by the meds.  There is a belief out there, by some people who have and do not have HIV, that everyone who is on ARV’s is fine now and there is nothing holding them back.  For those that this is true for GREAT, but it is NOT TRUE FOR EVERYONE.  There are people who do not tolerate the meds well and have many Dr’s appointments, medications for side effects and other concerns that most employers would not accept without an explanation, even if it is illegal for them to ask.  It can be even harder to claim your rights when you feel you have a limited employment history and lack confidence about your skills and what you have to offer.  There is also the reality that more and more people have many other medical concerns other than HIV alone like diabetes, Hepatitis, heart disease and depression.  Some people have these medical conditions because of the ARV’S or their diagnosis.  Life is not a one size fits all, but you are not alone either.  There are people in this world who are pulling for you even if we have never met you.  One of the places that I found some direction was going to conferences and trainings.  The world AIDS Conference is happening in DC in 2012 and you can apply for a scholarship to attend.  There are places like NAPWA that offer trainings and workshops and there is support for you to attend if you ask.  I am sure there are many others that you can apply for too; and if you do not get approved for 1 or 2 so what, keep applying and eventually you will find your way to an event that may change your whole perspective and provide you with answers you seek.  Just don’t give up!
Again your courage to ask the question you did is already helping others.  You may have inspired someone else to ask a question they are suffering in silence with.   

[Joe K]

Hey MATTCOPE
That you are reaching out to share your experience is great, it shows courage when many others are sitting in silence with the same fears and question but are unable to share for whatever reasons they have.  I have heard of what you are talking about from the costs to the hassle to go back to work.  I am glad to see many supportive responses to your question and just like the different responses; we are all having our own experiences with living with HIV.  I have heard from others that when they did try to go back to work that social security questioned their need for support when they needed to resume their benefits and not try to pursue a job.  Like others have written social security is Federal but the ARV drug plans are often state managed; and just to add to the confusion the meds for side effects are sometimes covered by Medicaid that a person qualifies for on social security.  It can be helpful to put your pills in front of you and sort who covers what; similarly then take some of the questions you have and write down who covers what.  When you have the basics on paper and have taken some of the mystery out of it you can ask more specific questions with clarity, like: “why when my Dr says I probably would not be successful in the work force is their some other Dr saying I need to get a job?”   When you have clarity it can reduce the fear of “what if”.  From there you can maybe get to the place of what do I have to do today?  What must I take care of?  what can I do? What do I want my life to be like?  What resources are out there to help me with the previous questions?
HIV is an episodic illness so sometimes you feel great and then for no apparent reason sometimes we feel rotten, and it is not easy to predict when the good days will be.  The meds are great, no question about it, but not everyone is on the same pills (so some cost $1600/month and some people’s meds cost many thousands of dollars/month) and some people have side effects while others seem to go through life unaffected by the meds.  There is a belief out there, by some people who have and do not have HIV, that everyone who is on ARV’s is fine now and there is nothing holding them back.  For those that this is true for GREAT, but it is NOT TRUE FOR EVERYONE.  There are people who do not tolerate the meds well and have many Dr’s appointments, medications for side effects and other concerns that most employers would not accept without an explanation, even if it is illegal for them to ask.  It can be even harder to claim your rights when you feel you have a limited employment history and lack confidence about your skills and what you have to offer.  There is also the reality that more and more people have many other medical concerns other than HIV alone like diabetes, Hepatitis, heart disease and depression.  Some people have these medical conditions because of the ARV’S or their diagnosis.  Life is not a one size fits all, but you are not alone either.  There are people in this world who are pulling for you even if we have never met you.  One of the places that I found some direction was going to conferences and trainings.  The world AIDS Conference is happening in DC in 2012 and you can apply for a scholarship to attend.  There are places like NAPWA that offer trainings and workshops and there is support for you to attend if you ask.  I am sure there are many others that you can apply for too; and if you do not get approved for 1 or 2 so what, keep applying and eventually you will find your way to an event that may change your whole perspective and provide you with answers you seek.  Just don’t give up!
Again your courage to ask the question you did is already helping others.  You may have inspired someone else to ask a question they are suffering in silence with.   

It's great that you are offering support, but please be careful in describing programs, because you have confused many of the programs in your post.  Social Security and Medicare are federally funded and operated programs, they are NOT administered by the states.  Medicaid, is a joint funded program, by the federal and individual state government and that program is administered by each state.  ADAP (Aids Drug Assistance Program) is also both federal and state monies and also administered by each state.  Compassionate Use programs are those provided by drug manufacturers, to assist patients in obtaining medications when they have no other coverage available.  These programs are generally coordinated between your doctor and the particular drug manufacturer.

There are so many programs and possible options that your best bet is to speak with someone who knows the systems.  That would be a case worker or an ASO and many places will assist you in obtaining the benefits you need.  What the OP needs is some help in understanding exactly which program is asking him to return to work and how he can remain on disability.

[MAKD]

Thanks killfoile for clarifying