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#24865 - 08/04/09 03:57 AM SSI/SSD
Mike&Aurora'sMom Offline
Member

Registered: 03/21/09
Posts: 5
Loc: McHenry, Illinois USA
Hello everyone,

I have read some of the boards here to find out about applying for SSI/SSD for our two children that have LI. I have two questions I am hoping you may be able to answer. First, what/is there a differenece between SSI and SSD? Also, since I am feeling overwhelmed with this process, what is the best way to even begin?

Thanks for your help!
_________________________
Denise

Michael 11/3/03
Aurora 6/6/05
Matthew and Gabryan 3/26/2010
(all 4 affected)

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#24866 - 08/04/09 12:16 PM Re: SSI/SSD [Re: Mike&Aurora'sMom]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I have been through the process and I am still not sure that I can explain it! SSI is supplemental income when you have limited income due to your disability and SSD is for when you have no income due to your disability (someone please jump in if I am getting this wrong!)
I know that when I applied for SSI, I was automatically applying for both and they selected what was right for me. I started by applying online. Trust me when I tell you that applying online is only the start. It's a half an hour or so of filling out info online, then you will get paperwork, get an appointment in the office and then there is MORE paperwork in the form of three booklets.
Sadly, due to the economy, more people than ever are filing for SSI and things are moving SLOW! Jump in and apply now to get the ball rolling.
http://www.ssa.gov/pgm/links_ssi.htm start here and start working your way through the process. And keep us informed as things move along so that we can help or at least give moral support!

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#26540 - 06/23/10 05:04 AM Re: SSI/SSD [Re: Glori]
Adrienne1 Offline
Member

Registered: 06/16/10
Posts: 24
Loc: Visalia, CA. Tulare County
I have my first appt. for disabilty on thursday. Any advice on what to say? My MD who saw me for prenatal care said he will confirm the diagnoses unofficially because he isn't a derm. Gave my consent for them to contact my ped whom I saw till 18. What should I say and or do. The flaking is really pronounced right now.
_________________________
26, affected (CIE I think)only one in family. Mother to Riley 22 months, unaffected.

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#26541 - 06/23/10 12:19 PM Re: SSI/SSD [Re: Adrienne1]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I applied back in March of 2008 and am still awaiting a decision. If you are just now getting your appointment you may still have a ways to go. At my appointment, it was mostly about answering basic questions and filling in some blanks. After that, they sent me MORE paperwork and then to an appointment at a doctor of their choosing.
Where are you in the process? Have you filled out paperwork yet? I think it was after the appointment that they sent me three booklets, two that I fill out and one filled out by a third person familiar with me and my situation.
The one other thing I can tell you is that the SS office here required a biopsy for confirmation since it's the only way to accurately diagnose what type you have. Fortunately, I have had seven of them, but it took MONTHS to get those records!

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#26543 - 06/23/10 08:23 PM Re: SSI/SSD [Re: Glori]
Adrienne1 Offline
Member

Registered: 06/16/10
Posts: 24
Loc: Visalia, CA. Tulare County
well, My MD said he'll confirm. I filled out the medical report and gave them the authorization to access my juvenile medical records. Have been waiting three months to see a derm here. But only have medi-cal and they don't wanna pay for it. I looked at the definition of a disability for icthyosis on the disability web-site and they said "skin lesions lasting for more than three months despite treatment" or something like that. Hopefully, it'll work. First appointment though. I gave them a phone number for my ex who was with me for two years and saw how bad it can get. When I go to my appointment, I'll give them phone numbers for my parents and my brother who will all say how bad the condition is. Like I said, they asked for a medical report and I gave them what I know. I filled it out stating I was diagnosed from birth. We'll see I guess. I did all that stuff online. They told me it was easier that way and usually faster.
_________________________
26, affected (CIE I think)only one in family. Mother to Riley 22 months, unaffected.

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#26544 - 06/23/10 08:27 PM Re: SSI/SSD [Re: Adrienne1]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
And can you also apply for your children? Based on what? I had no idea!

Good luck to you, I hope its not a terrible process!
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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#26545 - 06/23/10 08:45 PM Re: SSI/SSD [Re: MomofPrincesses]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I also filled out the paperwork online...and then had to fill out more paperwork that they mailed to me after my appointment. While I am waiting for a determination I have to fill out an update to my medical condition every few months.
Essentially, what they are going to want to know is why you are filing for disability NOW. They want to know what you used to be able to do that you can't do now...why can't you do the work that you used to, etc. And they will try to determine if you can still work with "accomodations", i.e. less sitting or less standing.
The lesions that they talk about are open, unhealed lesions that resist treatment. Simply having the ichthyosis isn't enough for their purposes. I guess I am "lucky" because I have three persistent, open sores that have not healed for nearly three years. They won't do phone interviews with your family members, but they will give you paperwork for them to fill out to discuss your condition.
I am only a few steps ahead of you in the process, but I have been on hold and waiting for two years now and according to the SS people, because of the economy, they have thousands more applications each MONTH than they ever had before.
The best advice I can give you is get an advocate. I got one and he has been a tremendous help to me!

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#26546 - 06/24/10 04:53 AM Re: SSI/SSD [Re: Glori]
Adrienne1 Offline
Member

Registered: 06/16/10
Posts: 24
Loc: Visalia, CA. Tulare County
Okay....I used to wok retail down in Los Angeles. I moved to an area that is at least 75% agriculture/food. Central Valley (Tulare california). All that's here is food industry. Restaurants (including fast food), packing houses, fields....the retail and other sectors are minimal. Aside from that everyday someone asks me about it. A few years ago a girl got fired from foot locker because she had psoriasis. When an employer see's me they will take the person without the skin disorder even if I am the best person for the job. It's not open discrimination, but it still hurts to know that you can't get a job. I've even tried applying to the company I used to work for showing that I am the best person for the job and they hired someone with no experience in the company over me.


One thing about the advocate....does it cost money to hire one, or is it free?


Edited by Adrienne1 (06/24/10 04:53 AM)
_________________________
26, affected (CIE I think)only one in family. Mother to Riley 22 months, unaffected.

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#26549 - 06/24/10 11:01 AM Re: SSI/SSD [Re: Adrienne1]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
My advocate works at Goodwill and this is his job, helping you get your disability. He doesn't cost anything, but if you get your disability, they ask that you give them 12% of the back pay that you receive when you are finally approved.
Attorneys generally get paid anywhere from 15 to 25%, so I would much rather donate to Goodwill than a lawyer.
I hear you about the job thing, I have lost about a LOT of jobs because of my skin and have been told so by nearly every employer that let me go. Proving it in court would be nearly impossible so I have never pursued litigation, just tried to move on. My problem is now that my skin has just gotten so bad that working is just painful and exhausting. I really want to work but I can't believe how much damage my skin is suffering being back in the workplace. At least drawing disability would give me the peace of mind that I can pay the bills and stay afloat.
In most of the states that I have lived in, there is a state rehabilitation service that will help you with jobs, education, finding the things you need to get through life with your disability and so much more. In California it's the California Department of Rehabilitation. I have a great caseworker here in Michigan and she has been a great source for me. Check them out and see how they can help you!

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#26551 - 06/25/10 02:57 AM Re: SSI/SSD [Re: Glori]
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
I applied for disabiltiy for my son and he got approved! The process was pretty simple. I filled out everything I could on-line and then scheduled an appt. with the social security office. I had to fill out some additional paperwork once I got there but not very much. Of course they check your income but the biggest thing, it seemed, was just getting verification from your doctors. But, they ask you for that info on line and then they contact your doctors and verify it...pretty simple. I received noctice of approval within a month. Good luck!
_________________________
My name is Candace. My son, kenny was born May 19, 2009 diagnosed with Lamellar Ichthyosis. My daughter Chloe was born June 4, 2011 unaffected.

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#26552 - 06/25/10 04:42 PM Re: SSI/SSD [Re: cschaap]
Adrienne1 Offline
Member

Registered: 06/16/10
Posts: 24
Loc: Visalia, CA. Tulare County
Went in for the appointment on Thursday. Found out that my case has already been sent to determination in Fresno. Hope it's quick. My landlords are needing the money, and so do I for that matter so I can get my own place. But going back to school in the fall no matter what.
_________________________
26, affected (CIE I think)only one in family. Mother to Riley 22 months, unaffected.

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#26553 - 06/25/10 07:40 PM Re: SSI/SSD [Re: cschaap]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
Candace -- I had no idea you could get disability like that on a child. What sort of income requirement is there? I'm going to send you a message on FB for details!
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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#26565 - 06/28/10 02:48 PM Re: SSI/SSD [Re: cschaap]
MamaH2 Offline
Member

Registered: 11/27/08
Posts: 77
Loc: Virginia
yep...it's much easier to get it for a child...harder when you're an adult. My MIL worked for 20+ years before being diagnosed with MS and had to retire for her health. She only got disability after going through all the appeals and eventually getting a lawyer and going to court to prove that she couldn't even be a greeter at walmart! Good Luck! I hope you get it. It's great that our government will take care of us, just remember it's so hard to get because they're trying to keep the fakers out and let legitimately disabled persons in.

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#26569 - 06/30/10 01:38 PM Re: SSI/SSD [Re: MamaH2]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
We make too much money according to the so very nice lady at the SSI office. I am going to get a lawyer I think b/c she wouldn't even let me complete an application showing how much money we gave up when I quit working. Its so frustrating!
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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#26582 - 07/04/10 04:42 AM Re: SSI/SSD [Re: MomofPrincesses]
Mike&Aurora'sMom Offline
Member

Registered: 03/21/09
Posts: 5
Loc: McHenry, Illinois USA
Kati- We are in the same boat with making too much money. I agree 100% that it is very frustrating. Our woman at the SSI office was actually very, very nice. She was really trying to figure something out since all of our children are affected, but the only thing she could finally say was "well, if one of you stopped working, you would definitely qualify." Hmmm, not really an option for us at this point. Good luck to you!!
_________________________
Denise

Michael 11/3/03
Aurora 6/6/05
Matthew and Gabryan 3/26/2010
(all 4 affected)

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#26748 - 08/09/10 03:48 PM Re: SSI/SSD [Re: Mike&Aurora'sMom]
NARE1226 Offline
Member

Registered: 01/16/10
Posts: 13
Loc: York, PA
I applied for SSI/SSD benefits for Evan last year but was quickly turned down because we didn't meet the income guidelines ~ I didn't even make it past the kind receptionist at the SSI/SSD counter. I found the whole experience very frustrating, so we just decided not to pursue it. Kati, please let us know what you find out through the attorney, I was curious if hiring one would change the decision. FYI - I was told that although Evan didn't qualify for SSI/SSD that we could receive a medical card for him that would cover any medical costs our insurance doesn't, to this point we have not applied.
_________________________
Mommy of Evan, born 12/26/2008 with Collodian, diagnosed with Lamellar Ichthyosis.
Evan has three brothers, Nathan (16 yrs.), Austin (13 yrs.) and Ryan (4 yrs.) all unaffected.

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#26757 - 08/11/10 03:49 AM Re: SSI/SSD [Re: NARE1226]
kekonen Offline
Member

Registered: 12/14/09
Posts: 58
I applied for SSI benefits for Annalie and we're waiting to hear from them. After I filled out the info online I had a phone appointment. I had to send in a medical release form, and that's where we stand now. We met the income requirement as my husband just graduated law school and is still looking for a job, and I am an unemployed teacher.

Regardless of income, you're right about our kids qualifying for Medicaid, NARE. It's definitely something to consider.
_________________________
Karen
Mom to Annalie born 7/17/09 (Mild Lamellar) & Hadley born 3/20/06

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