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A Flawed System!

This system we have is flawed! It is not right! I understand that there are a lot of sick people in this world and the government can't afford to pay for each one of them, but there has to be a better way. We would not be on SSDI if we did not have a medical reason to do so, so why is medical not provided right away? A 2 year waiting period is not acceptable! I would not care that I have to pay a deductible, but when your income is cut in 1/2 or more because you become disabled and have to go on to SSDI to begin with and then they want you to pay another 1/3 of that just to obtain medical...that does not leave you enough to support your family. That is poverty! We deserve better than that! That is not why we worked so hard and paid in taxes, so that when we became disabled or if something happened to us we could be at poverty level. That is just NOT okay!

It seems to me that the system needs to be changed. I just don't know where to begin in starting something like that. It is not right that there are hundreds, maybe thousands of capable people out there living off of our welfare system because they don't have the qualifications to obtain a job, or because they are lazy. I am not saying every person on welfare should be thrown off...I know that some states have systems in place (Utah did it for my sister when she applied for her disability) that you go on welfare while your application is in, but once you are approved they take your lump sum to pay back what you got for welfare, so at least this gets paid back. I am sure there are other reasons someone would be on welfare that may be justified, I just don't know. I just have a problem with the number of people who are perfectly healthy and capable of getting a job and don't, but soak up the resources that prevent people who actually need them from getting them. This just pisses me off!

Like I said though the system is flawed! It does not seem to me that it is right that someone who lives in NYC on SSDI and is single gets the same amount as someone in S. Dakota who is also single. Obviously the cost of living in NYC is much more expensive and so for the system to be fair things like cost of living should be taken into consideration....they aren't! This goes the same for SSI (although it does not matter if you are single or not because there is just a flat rate for SSI. It doesn't matter how many people are in your family). For SSDI you can claim your spouse and/or children also up to a specified amount, so there is a little more you can get if you have a child or if you are married, but it still is not much and they do not take into consideration anything like cost of living. Also, if you are awarded SSDI you do not qualify for medical coverage for 2 years and then you only qualify for Medicare, which is not the greatest coverage (but, it's better than nothing). SSI people automatically get Medicaid coverage which covers them at 100% (depending on the state they may have a small copay). This piece of the system I have a hard time with also. I think it is great that these people who are on SSI have Medicaid coverage. They did not ask to be disabled and it is not their fault they were unable to work and pay in taxes, however, for those of us who did work and pay in taxes, we should be eligible for medical also and immediately. There should be one system. The system I think should be evaluated based on a number of issues. They should take into consideration the illness, type of disability, need, cost of living in the area, income, family composition, if any health care is available (some people may have coverage available through a spouse but refuse it because they have Medicaid/Medicare through SSI/SSDI), etc. In order for the system to work properly it has to be based on each individual situation. You can't take a group of people from different areas with different disabilities and lump them together as one situation. That just does not work! My problem is...where do you even begin changing such a flawed system? I have no clue!

I have tried to contact my state representatives...that seems to do nothing (they were nice enough to give me the phone number for my drug company - Biogen, however, lol and tell me tat they get these call all the time). I even called a lawyer friend of the family that specializes in SSI/SSDI claims and was told that there is not much that can be done to change the system except to contact the state representatives, which I had already done. Talk about frustrating. How do you fight such a large system? I have been thinking about this a lot over the last couple of months (kind of in the back of my mind) because I feel like there should be something that can be done! I mean, if the state representatives office "gets lots of these types of phone calls" and even have the drug companies phone numbers on hand...that makes me think I am not the only one who is frustrated with the system. I am not the only one who has worked, paid in taxes, become disabled, only to be thrown into a system that doesn't care enough to want me to be able to maintain my health or support my family....after I worked to pay into that very system. So...I have been did the people come together to fight and get the Family Medical Leave Act of 1993 created? That is what we need to do! That happened out of Washington State (where I live) you know. Somehow I need to find others, and we need to come together and fight this! I just need to figure out how to go about doing that...and the reality is, it won't fix my current situation. I will probably have used up my full 2 year wait period and will already be on Medicare by time we could get anything accomplished (if we were to even get it done) but if we could get it done...just think how many other hard working MS'ers who are currently paying taxes that may one day have to go on SSDI it could benefit! Not to mention all the others with other disabilities. That would be a great thing!


camille said...

jaime, i agree.i have been denied twice and appealed once. i will have to see the alj judge lawyer said probably at the end of the year. if i was able to, i would work but i cant.for one point i wouldnt be out a lot probably. and other issues..yea we definatly are not getting rich on dissability. right now i am getting ltd from my employer,which is better than the ssdi BUT they will probably tell me to pay them back as soon or if i get ssdi.i dont know

Jaime said...

That is the thing isn't it. I would love to be working right now...and on some days I probably could, but others I can't...that is the problem with this illness, you just never know from day to day. This is why I have been trying so hard to work with my doctors to regain my health and for me MS is not the only health concern (there is the asthma and hx of cancer, liver issues from that treatment, and now the bone problems).

Not to mention if you work even on a part time basis then they start to cut the few benefits you do have (making it even harder for you to regain your health so that maybe one day you can go back to work full-time).

Without a better system in place what are we to do? The thing is I think it is going to be up to people like us to MAKE these changes happen! The reality of it is that unless someone who was in charge (i.e. congress) became sick and was forced to go on SSDI they are not going to understand really what we go through, but that won't happen because they are in a position where they will be taken care of medically and finacially for the rest of their lives.

I do believe that there is power in numbers however! If we could get enough people to come together who have gone without medical for the 2 years or scraped by or are still suffering to speak out...that would be a start. Also, all of the people like you, Camille, who are still fighting to get on SSDI.

If we could figure out how the people came together to get the FMLA of 1993 accomplished that would be the way to go! A petition is one way, but that can take a long time. We need a large number of people and a legistlative hearing (I think that is how to proceed). I am still doing research, but I do think it is something worth fighting...for everyone out there who is disabled (MS or not)!

I hope you are doing well. Please take care.


Disability Blogger said...

You're right. I am a former disability examiner ( I blog about this at My Social Security Disability Blog) and we used to talk about this inequity at the office. If you get approved for SSI, medicaid is there for doctor's visits and prescriptions. If you get social security disability, you're eligible for medicare not medicaid, but only after your date of entitlement, two years after your eligibility date for disability has been established. Making it even worse is the fact that if you're approved for social security disability, you lose five months of your benefits (they call it a five month waiting period). But if you get SSI, you are not subject to being robbed of almost half a year of benefits. This part of the system has always been flawed and unfair.

Jaime said...

Disability Blogger~

I am SO glad you stopped by! I have been doing some research and really think that we need to all come together (like in the case of the FMLA 1993) and MAKE this happen. I found out that the National Partnership for Women & Families were a big part of getting that passed through legislation. I made some calls to Washington D.C. today to their offices.

I really think that if I could get enough of us to come together than we can make a difference. I also sent off another letter to Congressman Hastings today! I want some results! Our lives very well could depend on it (the medical piece that is).

I am open to all suggestions and you can contact me through the email listed on my blog. I hope you are well. Please take care.


Anonymous said...

I agree that the system needs to be fixed. You may want to check out the following website that is working toward social security reform called the Social Security Disability Coalition.

Anonymous said...

I agree that the system needs to be fixed. You may want to check out the following website that is working toward social security reform called the Social Security Disability Coalition.

Jaime said...

Thanks Anonymous~

I will do that! I wish you would contact me or tell me who you are so that we could work together towards making these changes! If you prefer to keep anonymous can email me at I hope to hear from you. Please take care.


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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