Little OT... Social Security Disability ?

[Katie]

I am glad I found this thread.

My Dr. is telling me, I am almost to this point. I am a Rad. Technolgoist, which entiles pushing carts, wc's, people, handling cassettes non-stop, ect. Basically, everything I do, involves my wrists..which are detiorating at record speed.

I went to the SSI office on Tuesday..just to inquire about how and what....but, I think it is a hard battle to win.

Plus, you have to be NOT working to even apply. I went from my 50,000 yr salary to 20,000 salary when I went part time 8 months ago. HOwever, I am not sure, our family can contintue to thrive if I lose that salary too...for 6-9 months, then with NO guarantees.

My income from SSI..actually would be more than I make part time..because of my years of working and my yearly income being relatively high.

So, figure this out..I quit..and make more money from SSI..IFFFFFFFFFFFFFFf i get accepted. Which is up-in the air.

Or i continue to prod along, making half of what I am capable of..but am unable to work full time due tomy RA condtion.

I have had RA for 8 yrs. I am 33 now. I take the maximum amount of methrotraxate allowed, along with predisone(for 8 yrs..NOT GOOD), and relefan. We are in the works of trying to get my insurance company to cover REMICADE! I have 3 children at home.

My doctor wants me to have bilateral wrist surgery. Fusion or a total wrist replacement, which is only done in major hosptials around the country. If i have either done, the recovery time is 6-9 months PER wrist..and obviously, I can't have both done at the same time!
I am AGAINST surgery at all costs.

I am also against becoming a burden to my family, socially, financially, or in any other capacity. I will be a contributing member of this family.


I just do not know what path to take with this SSDI.
My husband makes close to 6 digit income..however, we are very used to my income and no income would change the way we live!

any suggestions?

 

[SueM in MN]

I don't have any advice for you Katie, but I feel for you. The whole thing is a bunch of gameplaying and they won't tell you what the rules are or what the outcome of it is until you go thru a certain amount of hurdles. Then they put more hurdles up and don't tell you what's beyond them.
A number of years ago, we applied for the TEFRA program (also called Katie Beckett program in some other states), which is a Medical Assistance waiver program. The child's income is looked at for eligablity (which means all qualify) instead of the parent's. We knew there was a co-pay that the parents had to pay monthly, depending on the family's income. Do you think anyone would tell us what the co-pay would be? Of course not. We needed to go through a whole long, time consuming and very insulting evaluation process. The insulting part was going to Social Services to apply for Medical Assistance. I arrived for an 8am meeting with a social worker and was told "Your meeting with the SW is after the group meeting about welfare that you are required to attend. That's at 9, but we tell you to come at 8 because "you people" are always late."
At the meeting, I had to listen to job hunting hints "Be on time for interviews... Make sure you have clean clothes and combed hair... You are expected to go on at least one job interview a week." This was despite the fact that both my DH and I were employed professionals.
When I finally got to talk to the SW, I found out our monthly copay would be more than we paid for our whole family for iunsurace for 6 months, plus OUR insurance would be the first payer, PLUS our SW would be our case worker who would decide what OUR insurance and MA would be responsible, PLUS any money that we paid in, but did not use during the year would go to the state. We decided, no way and spent the next 6 months trying to get them to stop billing us for our copay.

 

[chris1gill]

Katie,

I can't really say a whole lot other than if you can do ANY meaningful work at all, they will not approve you... I had initially heard that if you couldn't do the work for which you were trained, then you could collect.. but that isn't how it works... If it gets to the point where you cannot work at all, then you can apply & see what they say... but expect easily for the process to take 9 months to a year.... They denied me the first time because I could stand on my feet most of the day (which I never had to do at my job in the first place).. but as they wrote that, I was sitting in a wheelchair 90% of the time!!! They never read the application or the doctors notes, I'm quite convinced!!! They denied it & then lost my appeal for three months!!! The best I can say is find a disability lawyer & see what they say... it's hard to win in the first place & then even harder yet if you've been able to work even part time..... Good luck! I really understand what you are going through....

 

[LindaDVC]

I think a lot of the problem is that so many people who COULD work choose not to.

I am not judging any one here but I do have a friend who chooses not to work because she has knee problems.

My husband on the other hand chooses to work with quadraplegia. He has no use of his wrist , hand, or legs. He has breathing problems has had numerous pheumonias requiring trachs, vents, and months in ICU> Currently both legs have an infection and he has considered bilateral amputations to be able to continue to work.

I think they should encourage people to work. Help with benefits for those who are able to work. Reward people who try to work parttime. Have incentives or tax breaks for those who try!

One time Dan went back to work parttime and he made less than he did on disability! As his endurance increased and his hours could increase things got financially better. We could look ahead and see the advantages BUT those months when he brought home less were pretty rough financially and emotionally!
The system needs some MAJOR revamping.

I will go read some happy disney stories and look forward to our next trip which is at OKW 15 days!!!

Linda

 

[chris1gill]

Linda,

Have they changed the way they award benefits? I remember a while back (like a few years at least) They would award if you could not do the job for which you were trained, whereas now if you can get any meaningful employment at all, they will deny you... The other thing I wanted to ask you, how does your DH get to work or doctor appointments? It's a major problem for me, we're kind of rural, and my DH leaves at 6am & doesn't get home til 6pm... course meanwhile I can't drive anywhere..... Doctor appointments are another problem, it's 50 miles one way, and I see three doctors every three months or less and another every 2 months... plus any testing or whatever... so my DH is forever taking time off, driving home & then driving me to the appointments... Are there any services I should look into that could help me out with all of this?

Thanks!

 

[LindaDVC]

Locally here in NC we have door to door wheelchair accessible transportation. You have to be flexible -- Dan often goes to work an hour early and gets home a lot later than he gets off! I usually take him to the drs appts and arrange them as late in the day as possible so we don't interfere with our work schedules. On a normal day I spend two hours on the road taking son to school and heading to work so it is great I don't have to drive him to work daily too.

Dan works for American Express and they call him in to the office every now and then to see if their is anything they can make more accessible or easier for him. When he got Ned (his service dog) they were great and accepted Ned as the newest AmEx employee.

Amex has great insurance and other benefits so we have been lucky. I am diabetic and can't get private insurance. His benefit package allows me to contract and not have a fulltime position. In fact we just went by his office to get some of his incentive (bonus) money that will pay for our 3 seven day park hoppers!
Thanks AmEX!!!

Some areas don't have the employment options that we have in this area. We have very low unemployment and quite a few large customer service based companies.

Linda

 

[chris1gill]

Hi Linda,

Thanks! It sounds like you're doing okay, that is great! How would I go about finding such a van in our area? I haven't seen anything like it, but that doesn't mean it's not here!! I don't know about your DH, but where I am, nobody has really offered any services or any good suggestions about how it is I am supposed to live a more normal life given all the things that are wrong with me!! It wasn't until I was no longer mobile that I applied for Disability... It was really the last straw in a long medical battle... Anyways, it's been just about a year that I've not been mobile, and I'm still where I was a year ago.... I just feel like I live in a really BAD place to have these problems, but my DH is not willing to move to a more accessible location... It wouldn't be so bad if it was just the legs.. but the legs are not actually my worst problem.. my smooth muscles are failing (swallow is the big one, eyes are the next biggie, but then there are more that I won't get into, but you can probably just imagine....) So I think it is just the entire combination that have me rather overwhelmed... Oh, but I still look great sitting in my wheelchair LOL...

You can email me privately if you want, my email is in my profile! Thanks for any insight you can give me to get me more adapted to my situation!

 

[SueM in MN]

In many areas, there is a United Way sponsored agency called First Call for Help . It's a referal agency where they have databanks of information about all kinds of services. I referred people to them a lot in various places when I was a Public Health Nurse.
I believe that federal law requires any municipal or regional bus service to also provide services for people with disabilities who can't use the regular bus service. This can be with special small buses, vans, etc. And they can contract it out if they don't have the vehicles themselves.

 

[chris1gill]

Hi Sue, Thanks for the referral, I'll definitely give them a call... I should say we are in a pretty rural location... we don't actually have any bus service or taxi's in our town or any surrounding town... although we do have a towncar service, which I wonder if I couldn't work something out with them during their down time... But, I wonder if calling the senior center might be a good idea... more than anyone else in our town, I would think they would know about our area & services available in the town itself... Thanks! I'll let you know if I get any luck!!

 

[SueM in MN]

Calling the Senior Center is a good idea. They usually have someone that acts as a coordinator and knows what sorts of services are available and how to get hooked up with them. We worked pretty closely with the Senior Center in the towns I was working in. There may also be a County Commission on Aging or something with a name similar to that.